Comfort Needs of Cancer Family Caregivers in Outpatient Palliative Care

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.

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Factors associated with feelings of reward during ongoing family palliative caregiving

Palliative & Supportive Care ◽

10.1017/s1478951514000145 ◽

2014 ◽

Vol 13 (3) ◽

pp. 505-512 ◽

Cited By ~ 1

Author(s):

Anette Henriksson ◽

Ida Carlander ◽

Kristofer Årestedt

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Influential Factors ◽

Cross Sectional ◽

Spousal Relationship ◽

Factors Associated ◽

Specialized Palliative Care ◽

Cross Sectional Design ◽

Bereaved Family ◽

Demographic Background

AbstractObjective:Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers.Method:Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards.Results:The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving.Significance of results:It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

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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

10.21203/rs.2.12263/v2 ◽

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.

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How to Integrate Palliative Care Within Primary Healthcare- Perspectives of People Living With Serious Illnesses, Their Family Caregivers and Primary Healthcare Professionals in Nigeria

10.21203/rs.3.rs-1086435/v1 ◽

2021 ◽

Author(s):

Oladayo A Afolabi ◽

Kennedy Nkhoma ◽

Olaitan Soyannwo ◽

Akinyemi Aje ◽

Adesola Ogunniyi ◽

...

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Primary Healthcare ◽

Healthcare Providers ◽

Health Coverage ◽

Middle Income ◽

Healthcare Facilities ◽

Care Integration ◽

Qualitative Interview Study ◽

Building Information

Abstract Background Palliative care should be integrated into primary healthcare systems within low- and middle-income countries to achieve Universal Health Coverage goals. We aimed to identify preferences and expectations for primary healthcare support among people living with serious illness and their families in Nigeria, and to determine feasible steps palliative care integration within the health system. Methods Qualitative interview study with 48 participants including people living with serious illnesses (n=21) and their family caregivers (n=15) recruited from specialist clinics at a Teaching hospital in Nigeria; and healthcare providers (n=12) recruited from three primary healthcare facilities in Nigeria. Data were analysed using thematic analysis. Results Three major themes were identified. 1) Balancing patients and families’ expectations and preferences for easily accessible service and opportunities for social interaction and adequate communication with available human resource. 2) Engaging patients requires existing trust and bonds from their current use of primary healthcare and support to develop patients’ agency. 3) Development of healthcare providers is needed to ensure an appropriate clinical response, manage interprofessional trust and ensure clear role delineation. Conclusions Palliative care integration within primary healthcare in Nigeria can be achieved through building information and communication skills of healthcare providers, engaging and empowering patients to exercise their agency in care decisions, and adequately delineating healthcare providers’ roles to ensure staff work within their competencies and training.

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