The experiences of well-being of family caregivers in palliative care: A qualitative study using thematic analysis

2021 ◽  
pp. 1-8
Author(s):  
Tan Seng Beng ◽  
Yeoh Kee Ying ◽  
Cheah Ai Xin ◽  
Lim Ee Jane ◽  
Dong Chooi Lin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Well Being

scholarly journals A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial

2019 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Low Xinyi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Controlled Trial ◽  
Well Being ◽  
Writing Intervention ◽  
Open Label ◽  
Randomized Controlled ◽  
Life Threatening Illness ◽  
Spiritual Well Being ◽  
Life Threatening

Abstract Background: Conventionally, psycho-socio-spiritual interventions for parents of children with chronic life-threatening illness begin post child loss. Pre-loss interventions addressing anticipatory grief can improve holistic well-being and grief outcomes among family caregivers of dying patients. Globally, palliative care strives to holistically support patients and their caregivers at the end-of-life. However, inadequacies exist both globally and in Singapore in providing culturally sensitive psycho-socio-spiritual support to parents whose children need pediatric palliative services. Aim: A novel evidence-based Narrative e-Writing Intervention (NeW-I) is developed to address this gap. NeW-I is a strength-focused, meaning-oriented and therapist-facilitated mobile app and web-based counseling platform that aims to enhance quality of life, spiritual well-being, hope and perceived social support, and reduce depressive symptoms, caregiver burden and risk of complicated grief among parents facing their child’s chronic life-threatening illness. Methods: The design of NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of bereaved parents of children with chronic life-threatening illness. The online NeW-I platform and the relative anonymity it offers to participants is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with emotional expression even during times of loss and separation. Together with four local pediatric palliative care providers, NeW-I is implemented in Singapore as an open-label pilot randomized controlled trial with 72 parents. Potential effectiveness of NeW-I and accessibility and feasibility of implementing and delivering the intervention are assessed. Discussion: NeW-I aspires to improve psycho-socio-spiritual well-being of parents facing their child’s chronic life-threatening illness through a structured cyber-counseling platform, thereby enhancing holistic pediatric palliative care and parental bereavement support services. Findings from this pilot study will inform the development of a standardized NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.

Telemedically Augmented Palliative Care

2014 ◽  
pp. 185-201
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Hospital Admissions ◽  
Intervention Group ◽  
Symptom Burden ◽  
Well Being ◽  
Control Group ◽  
User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

The Influence of Confucianism on the Perceptions and Process of Caring Among Family Caregivers of Persons With Dementia: A Qualitative Study

2020 ◽  
pp. 104365962090589 ◽  
Author(s):  
Hing Cheung Yiu ◽  
Yuli Zang ◽  
Jocelyn Han Shi Chew ◽  
Janita Pak Chun Chau
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Family Relationships ◽  
Family Caregiving ◽  
Growth And Development ◽  
Elderly Care ◽  
Chinese Family ◽  
Culturally Adapted ◽  
Semistructured Interviews

Introduction: Scant evidence reveals the influences of Confucianism on family caregiving in dementia. The purpose of this study was to explore the influence of Confucianism on the perceptions and process of caring among the Chinese family caregivers. Method: A qualitative study was conducted using semistructured interviews with 15 Chinese family caregivers of persons with dementia in three elderly care centers in Hong Kong. The interviews were audiotaped and transcribed, while a thematic analysis was performed to analyze the transcript at the latent level. Results: Three themes emerged from the interviews: (a) setting family as a top priority, (b) growth and development in families, and (c) enhancing family relationships. Discussion: Our findings provided insights into how Confucianism influences the experience of family caregivers in caring persons with dementia in Chinese communities. These findings help develop culturally adapted interventions to improve the support for family caregivers of persons with dementia.

scholarly journals Knowledge, Attitudes and Expectations of Physicians with Respect to Palliative Care in Ecuador: A Qualitative Study

2020 ◽  
Vol 17 (11) ◽  
pp. 3906 ◽  
Author(s):  
Viviana Dávalos-Batallas ◽  
Vinita Mahtani-Chugani ◽  
Carla López-Núñez ◽  
Víctor Duque ◽  
Fatima Leon-Larios ◽  
...  
Keyword(s):  
Palliative Care ◽  
Health Policy ◽  
Qualitative Study ◽  
Health Services ◽  
Human Resources ◽  
Thematic Analysis ◽  
Medical Professional ◽  
Structured Interviews ◽  
Unequal Distribution

Background: The worldwide need for palliative care is high, especially in mid- income countries like Ecuador, where the percentage of patients receiving such care is very small due to the scarcity of infrastructure and specialized personnel and to the unequal distribution in the country. The objective of this study is to explore the knowledge, attitudes and expectations related to palliative care of the physicians in Ecuador. Methods: A qualitative study based on 28 semi-structured interviews, from March 2014 to November 2016, with physicians working in four cities in Ecuador recruited through the snowball technique. Thematic analysis was developed supported by the ATLAS.ti software. Results: Five core themes were identified: (1) training, (2) health policy, (3) professionals’ activities, (4) health services and (5) development of palliative care in Ecuador. Conclusions: Strategies are needed which intensify the training of medical professional in palliative care, as well as avail the human resources and materials for providing it.

The Psychological Well-Being Scale for Family Caregivers in Palliative Care

2009 ◽  
Vol 12 (11) ◽  
pp. 985-985 ◽  
Author(s):  
Kitty K. Wu ◽  
Valda W. Cho ◽  
Anna Li ◽  
W.T. Chen ◽  
Doris M. Tse
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Well Being ◽  
Psychological Well Being

scholarly journals The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study

2021 ◽  
Vol 0 ◽  
pp. 1-7
Author(s):  
Fahisham Taib ◽  
Khoo Teik Beng ◽  
Lee Chee Chan
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Coping Strategies ◽  
Thematic Analysis ◽  
Neurological Disorders ◽  
English Language ◽  
Kuala Lumpur ◽  
Neurological Conditions ◽  
Depth Interviews

Objective: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. Materials and Methods: A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information. Results: A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers’ context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children. Conclusion: There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers’ needs and the planning for palliative care support.

scholarly journals Community caregivers' perspectives of community well-being in a mining community

2017 ◽  
Vol 22 ◽  
pp. 316-324 ◽  
Author(s):  
Vicki Koen ◽  
Elizabeth Hermina Ryke ◽  
Martha Jacoba Watson ◽  
Elize Sonja Van Eeden
Keyword(s):  
South Africa ◽  
Data Collection ◽  
Qualitative Study ◽  
Thematic Analysis ◽  
Local Community ◽  
Well Being ◽  
Multidisciplinary Research ◽  
Mining Communities ◽  
Community Wellbeing ◽  
Mining Community

Mining communities throughout the Southern African Development Community are faced with numerous challenges impacting on their wellbeing. As part of an integrative multidisciplinary research project, this study sought to explore aspects that affect community wellbeing in the informal Bekkersdal mining community in South Africa from the perspective of local community caregivers. An explorative-descriptive qualitative study including 22 mainly female (91%) participants who were purposively sampled was conducted. As part of data collection, participants answered a series of open-ended questions in a questionnaire and kept journals. Thematic analysis was used to analyze that data. The results indicate aspects that either promote (contribute to) or hinder community wellbeing.

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