EXPLORINGTHE PREPAREDNESS OF FAMILY CARE GIVERS TO PROVIDE CANCER PALLIATIVE CARE

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.

Download Full-text

The impact of hospital settings on the mood status of family care givers

Journal of Hospital Administration ◽

10.5430/jha.v3n5p144 ◽

2014 ◽

Vol 3 (5) ◽

pp. 144

Author(s):

Syed Muhammad Mustahsan ◽

Rehan Shamim ◽

Mustafa Mushtaq ◽

Khalil Farooque ◽

Rabeeya Razzaque ◽

...

Keyword(s):

Public Health ◽

Health Sector ◽

Family Care ◽

Anxiety And Depression ◽

Care Providers ◽

Public And Private ◽

Public Health Sector ◽

Care Givers ◽

Care Giving ◽

Private Health Sector

Objective: This study aimed to find out the existing differences in anxiety and depression among patient’s family care providers in public and private health sectors of Karachi. Background: For family care givers, care-giving is extremely rewarding it makes a bond between patient and a care-giver. It makes a union which is indispensable for patient welfare. The wellness of caregiver depends on patient’s condition and level of satisfaction with the circumstances associated with care-giving, undeniably care-giving constitute myriad of stresses, like depression, anxiety, frustration which if not addressed can have serious impact on caregivers health and can even make them resentful of their role as well. The present study was conducted to investigate the major mood changes among patients’ family care givers in public and private health sectors. Method: A cross-sectional study was carried at Jinnah Postgraduate Medical Centre (Public Health Sector) and Liaquat National Hospital (Private Sector) from 1st March till 1st August, 2013. The study was conducted on the family care givers of the patients residing with them at the hospitals. Hospital Anxiety and Depression Scale (HADS) was completed by 288 participants out of 290 caregivers who enrolled in the study. The HADS was used to evaluate the factors and symptoms of mood disorder (anxiety and depression) in the caregivers of patients. Results: Out of 288 participants who completed the HADS, 223 showed a high rate of psychological disturbed state which was more prevalent in the females (79.8%) than males (75.1%). The HADS was equally filled by the caregivers at public health sector (n = 145) and private health sector (n = 145). The total cases of mood disorder is relatively high in the caregiver population and most of the cases were found in public health sector (n = 134) as compared with private health sector (n = 89). Conclusion: Anxiety and depression among the patients family care providers was very appreciable especially in Public Health Sector as compared to Private Health Sector perhaps due to economic burden, doctor-family caregiver relationship and negligence of concerned authorities. We strongly suggest and request concerned authorities to reduce stress and enhance the quality of life of family care-provider.

Download Full-text

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

Cancers Review ◽

10.18488/journal.95.2018.41.1.7 ◽

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.

Download Full-text

Non-use of community health-care services – an exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

Ageing and Society ◽

10.1017/s0144686x2000015x ◽

2020 ◽

pp. 1-25

Author(s):

Jill-Marit Moholt ◽

Oddgeir Friborg ◽

Nils Henriksen ◽

Torunn Hamran ◽

Bodil H. Blix

Keyword(s):

Health Care ◽

Community Health ◽

Health Care Services ◽

Family Care ◽

Community Health Care ◽

Cross Sectional ◽

Care Services ◽

Care Givers ◽

Care Giving ◽

Use Of Services

Abstract Community health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. The aim of this study was to examine family care-givers’ knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Multinomial logistic regression analysis was used to identify predictors of family care-givers’ knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Characteristics of family care-givers (e.g. education level) and factors related to the care-giving circumstances (e.g. negative impact of care-giving) predicted family care-givers’ knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g. reluctance to use services) and/or the health-care services (e.g. low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Strategies aimed at addressing the non-use of services should emphasise individuals’ and families’ needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care.

Download Full-text

Training Otolaryngologists in Palliative Care Delivery: An Underutilized Opportunity

Otolaryngology ◽

10.1177/0194599817735314 ◽

2017 ◽

Vol 158 (1) ◽

pp. 24-26 ◽

Cited By ~ 1

Author(s):

Yemeng Lu-Myers

Keyword(s):

Palliative Care ◽

Head And Neck Cancer ◽

Head And Neck ◽

Neck Cancer ◽

Psychosocial Support ◽

Care Delivery ◽

Care Providers ◽

Treatment Paradigm ◽

Positive Effect

Palliative care is an underutilized and often misunderstood discipline in the treatment of patients with head and neck cancer. The key components of palliative care include symptoms management, psychosocial support, and enhanced communications. Abundant evidence has demonstrated the beneficial effect for the early incorporation of palliative care in the treatment paradigm for patients with chronic diseases and malignancies, with findings supporting its positive effect on patients’ quality of life as well their survival. Particularly for otolaryngologists, the unique morbidities of head and neck cancer make our patients especially vulnerable and even more in need of the support and benefits that can come from palliative care. While increased consultation with palliative care providers for patients with head and neck cancer is a good first step, training otolaryngologists to develop their own “primary palliative care competencies” is key for improving our patients’ outcomes.

Download Full-text

The importance of providing palliative care for patients with severe COVID-19 in Indonesia

Belitung Nursing Journal ◽

10.33546/bnj.1466 ◽

2021 ◽

Author(s):

Christantie Effendy ◽

Martina Sinta Kristanti

Keyword(s):

Palliative Care ◽

Health Care Providers ◽

Health Workers ◽

Psychosocial Support ◽

Healthcare Providers ◽

Care Providers ◽

Case Scenario ◽

Severe Condition ◽

Dying With Dignity ◽

The Common

Patients with Coronavirus Disease 2019 (COVID-19), particularly those with a severe condition, might not survive. Pandemic situation challenges the healthcare providers in addressing palliative care to the patients. This paper aimed to describe the importance of providing palliative care for patients with severe COVID-19 in Indonesia. We used a case scenario to illustrate the common condition experienced by a patient with severe COVID-19. Health care providers in Indonesia could address palliative care for patients with COVID-19 by focusing on controlling the symptoms, avoiding futile intervention, and connecting the patients and their families. Nurses need to consider the patients’ needs for family supports, even though not in physical or psychosocial support, and help the patients who need end-of-life care to be dying with dignity. Communication technology must be utilized optimally by healthcare providers to realize the communication among the patients, families, and health workers.

Download Full-text

Informal Female Caregivers of Older Adults with Dementia in Taiwan

Californian Journal of Health Promotion ◽

10.32398/cjhp.v2i3.880 ◽

2004 ◽

Vol 2 (3) ◽

pp. 53-66 ◽

Cited By ~ 14

Author(s):

Chiung-Yu Huang

Keyword(s):

Older Adults ◽

Data Analysis ◽

Behavioral Problems ◽

Pearson Correlation ◽

Family Care ◽

Mediating Effect ◽

Negative Consequences ◽

Care Givers ◽

Care Giving ◽

The Relationship

Family care givers providing a major portion of care giving often experience stress related to the negative consequences for their health. Female care givers often more heavily involved care giving activities than males. Care givers’ gender studies have seldom conducted in Taiwan. The purpose of this study was to explore the relationship of demographic factors and coping on health of female care givers of older adults with dementia in Taiwan. In addition, whether coping mediated or moderated the relationship between stress and care giver’s health was also examined. Lazarus and Folkman’s Stress model guided this study. Using a secondary data analysis method, this study examined data collected from the family care givers of older adults with dementia (2002). One hundred and three female care givers were analyzed by applying Pearson correlation, simple and multiple regression analysis. The findings showed care givers who are younger, more income, and with helpers had better health. Care givers who had less income, without helpers, and caring for care recipients with more behavioral problems had more depressive symptoms. In addition, mediating effect of avoidance coping was supported in this study. The data analysis from this study will provide a basis for nurses to develop interventions that minimize the negative impacts on female care givers.

Download Full-text

PROVIDER-IDENTIFIED BARRIERS TO PALLIATIVE CARE FOR MEDICAID PATIENTS

Innovation in Aging ◽

10.1093/geroni/igz038.2540 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S689-S689

Author(s):

Susan Enguidanos ◽

Anna Rahman ◽

Deborah Hoe ◽

Kate Meyers

Keyword(s):

Palliative Care ◽

Psychosocial Support ◽

Physician Education ◽

Theory Approach ◽

Care Providers ◽

Cultural Mismatch ◽

Individual Interviews ◽

Barriers To Access ◽

Home Based ◽

Seriously Ill Patients

Abstract In January 2018, California enacted Senate Bill 1004, which requires Medicaid (or Medi-Cal in California) managed care providers to offer home-based palliative care (HBPC) to their seriously ill patients. Since then, enrollment in HBPC has been lower than projected, which means many across the state continue to suffer without the pain and symptom management and psychosocial support available from a palliative care team. This study elicited clinician-perceived barriers to access to HBPC by Medi-Cal patients. We conducted a qualitative study comprising 25 individual interviews with a range of healthcare leaders and practitioners. Interviews were audio-recorded and transcribed verbatim. Using a grounded theory approach, we analyzed transcripts to determine primary themes. Our findings identified a myriad of access barriers to HBPC for the Medi-Cal population, including lack of physician knowledge about HBPC programs and benefits, a physician office structure that hampers the provision of HBPC education (i.e., one physician per office), cultural and language barriers among both physicians and patients, physicians’ lack of time, and competing demands on physicians. Providers also identified patient-related barriers, including cultural mismatch between HBPC providers and patients, trust issues related to the health-care system, and the complex challenges facing some patients such as lack of adequate and safe housing, behavioral health problems, and limited access to services that meet basic needs. These findings underscore the need for multiple approaches to increase physician education and awareness of HBPC and HBPC Medi-Cal benefits, develop culturally appropriate HBPC services, and develop programs that improve patients’ palliative care health literacy.

Download Full-text

Reciprocity between older adults and their care-givers in emigrant households of Kerala, India

Ageing and Society ◽

10.1017/s0144686x19001685 ◽

2020 ◽

pp. 1-27 ◽

Cited By ~ 3

Author(s):

Allen Prabhaker Ugargol ◽

Ajay Bailey

Keyword(s):

Older Adults ◽

Social Exchange ◽

Adult Children ◽

Large Scale ◽

Family Care ◽

Adult Care ◽

Exchange Relationship ◽

Care Givers ◽

Care Giving ◽

Care Relationships

Abstract The felt obligation to return a benefit, termed reciprocity, has been identified as motivating care exchanges between older adults and their younger family members. Within the context of large-scale emigration of young adults from the Indian state of Kerala, this study examines how left-behind older adults and their family care-givers recognise, interpret and give meaning to reciprocal exchanges, expectations and obligations in their care relationship. Employing a social exchange perspective, we qualitatively explore the norm of reciprocity through in-depth interviews of 48 participants (older adults and their care-givers) from emigrant households. Older adults and their care-givers identified reciprocal notions in their care exchange relationship that provided an interpretive framework for describing expectations, motivations, obligations and experiences across care-giving relationships. Spousal care-givers derived reciprocal motives and mutual care obligations through the institution of marriage. Adult children recognised filial duties and responsibilities and were in principle prepared to provide care to their parents. Reciprocating the support received and the likelihood of intergenerational transfers motivated care exchanges from adult children to their older parents. Daughters-in-law executed transferred filial roles from their emigrant husbands and bore a larger burden of care. Primary adult care-givers relied on the ‘demonstration effect’, hoping that children observe the care-giving process and emulate it later. Imbalances and non-reciprocity in the care exchange led to frustrations and threatened the care relationships.

Download Full-text

Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002576 ◽

2021 ◽

pp. bmjspcare-2020-002576

Author(s):

Dania Schütze ◽

Fabian Engler ◽

Cornelia Ploeger ◽

Lisa-R Ulrich ◽

Michaela Hach ◽

...

Keyword(s):

Palliative Care ◽

Psychosocial Support ◽

Federal State ◽

Theory Approach ◽

Care Providers ◽

Narrative Interviews ◽

Complex Needs ◽

Paediatric Palliative Care ◽

Intermittent Care ◽

Limiting Condition

ObjectiveIn Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents’ experiences and their demands of collaboration with SOPPC teams.MethodsWe conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data.ResultsParents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents’ need for specialised professional assistance and their simultaneous empowerment by SOPPC teams.ConclusionsParents’ perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.

Download Full-text

Experiências de cuidadores nos cuidados paliativos e redes de suporte

Revista de Enfermagem UFPE on line ◽

10.5205/1981-8963-v12i11a236208p2916-2922-2018 ◽

2018 ◽

Vol 12 (11) ◽

pp. 2916

Author(s):

Juliana Dias Reis Pessalacia ◽

Alexandre Ernesto Silva ◽

Débora Heloísa Quadros Araújo ◽

Mírian Aparecida De Lacerda ◽

Kelly Caroline Dos Santos

Keyword(s):

Palliative Care ◽

Psychosocial Support ◽

Family Care ◽

Minas Gerais ◽

Support Networks ◽

Support Network ◽

Daily Routines ◽

The Family ◽

Apoyo Social ◽

Qualitative Descriptive

RESUMOObjetivo: compreender as experiências vivenciadas por cuidadores familiares de pacientes elegíveis para cuidados paliativos. Método: estudo qualitativo, descritivo e exploratório, fundamentado na fenomenologia social. Entrevistaram-se 20 cuidadores cadastrados na atenção primária à saúde. Realizou-se a coleta de dados por meio de entrevista fenomenológica e interpretada através das fases de descrição, redução e compreensão. utilizou-se a técnica de Análise de Conteúdo na modalidade Análise Ttemática categorial, com o auxílio do programa ATLAS TI 7. Resultados: identificaram-se as categorias: Redes de apoio ao familiar cuidador; Dinâmicas e rotinas diárias de cuidados prestados pelo familiar; Sobrecargas físicas e mentais do cuidador familiar. Conclusão: vivenciaram-se pelos cuidadores importantes mudanças em suas rotinas diárias, o que acabou por ocasionar uma sobrecarga física e mental aos mesmos, levando à necessidade de redes de apoio formais e informais para estes cuidados. Observou-se a inexistência de uma rede de apoio formal aos cuidadores e a falta de treinamento e orientação suficientes para realização do cuidado junto a seu familiar. Ressalta-se a importância da atuação dos equipamentos da APS, por meio do apoio às necessidades biopsicossociais destes cuidadores. Descritores: Atenção Primária à Saúde; Cuidados Paliativos; Cuidadores; Apoio Social; Sistemas de Apoio Psicossocial; Percepção.ABSTRACT Objective: to understand the experiences by the family caregivers of patients eligible for palliative care. Method: this is a qualitative, descriptive and exploratory study, based on social phenomenology. There were 20 caregivers interviewed who were enrolled in primary health care in a city of Minas Gerais, Brazil. Data collection was performed through a phenomenological interview and interpreted through the description, reduction and understanding phases. As for the analysis of the data, the categorical thematic modality was used, with the help of the program ATLAS TI 7. Results: the following categories were identified: Support networks for the caregiver family; Dynamics and daily routines of family care; Physical and mental overloads of the family caregiver. Conclusion: The caregivers experienced important changes in their daily routines, which led to a physical and mental overload, leading to the need for formal and informal support networks for these care. There was a lack of a formal support network for caregivers and a lack of adequate training and guidance for the care of the family member. The importance of the performance of PHC equipment is highlighted, by supporting the biopsychosocial needs of these caregivers. Descriptors: Health Primary Care; Palliative Care; Caregivers; Social Support; Psychosocial Support Systems; Perception. RESUMEN Objetivo: comprender las experiencias vividas por cuidadores familiares de pacientes elegibles para cuidados paliativos. Método: estudio cualitativo, descriptivo y exploratorio, fundamentado en la fenomenología social. Fueron entrevistados 20 cuidadores registrados en la atención primaria a la salud de un municipio de Minas Gerais, Brasil. La recolección de datos fue realizada por medio de entrevista fenomenológica e interpretada a través de las fases de descripción, reducción y comprensión. En el análisis de los datos, se utilizó la modalidad temática categorial, con el auxilio del programa ATLAS TI 7. Resultados: fueron identificadas las categorías: Redes de apoyo al familiar cuidador; Dinámicas y rutinas diarias de cuidados prestados por el familiar; Sobrecargas físicas y mentales del cuidador familiar. Conclusión: los cuidadores vivieron importantes cambios en sus rutinas diarias, lo que acabó por ocasionar una sobrecarga física y mental a los mismos, llevando a la necesidad de redes de apoyo formales e informales para estos cuidados. Se observaron la inexistencia de una red de apoyo formal a los cuidadores y la falta de entrenamiento y orientación suficientes para realización del cuidado junto a su familiar. Se resalta la importancia de la actuación de los equipamientos de la APS, por medio del apoyo a las necesidades biopsicosociales de estos cuidadores. Descriptores: Atención Primaria a La Salud; Cuidados Paliativos; Cuidadores; Apoyo Social; Sistemas de Apoyo Psicosocial; Percepción.

Download Full-text