PROBLEMS OF FAMILIES WITH TERMINALLY ILL

2018 ◽  
Vol 28 (2) ◽  
pp. 603-611
Author(s):  
Tsvetka Boycheva ◽  
Mariya Dimitrova
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Member ◽  
New Technologies ◽  
Medical Science ◽  
Terminally Ill ◽  
Social Institution ◽  
The Family ◽  
Social Difficulties

In recent decades, there has been a growing public interest in palliative care. This is dictated by the ever increasing number of people who need it. With advances in medical science and the development of new technologies, life expectancy has increased, but at the same time, the number of years spent in illness and suffering has increased. Still, death is not defeated, but pain and suffering can be relieved, and the quality of life of the terminally ill and their families can be improved. Palliative care is overwhelming. They target the patient and his family. They meet the psychic, social, spiritual and cultural needs of the patient, provide training and support to relatives. The family is a social institution that ensures the biological and social continuity of the human race. There is a correlation between it and health. Today it is impossible to function and develop properly without providing optimal health to its members. Diseases of a family member adversely affect his or her functions. Reproductive, economic and psycho-emotional function is impaired. A home is a place where one lives fully and most people prefer their care to be done at home. The needs of patients in need of palliative care are specific. Apart from a health problem, they also have spiritual, social and mental needs. The most frequent care of these patients is taken by a relative or a family member. In most cases, they lack the necessary skills, resources and time. This clearly shows that the quality of life of these patients and their families is not guaranteed. The purpose of this study is to find out what influence has the care of terminally ill on his family. The subject of the study is 602 persons, close to terminally ill in 30 medical institutions in the country. Within a six-month period from 01.11.2017 to 30.04.2018. With the help of a direct individual survey, how the care of the terminally ill is reflected in his family was identified. Statistical methods for data processing and analysis were used. Results: The family is experiencing great stress when there is a severely sick patient in it. The lifestyle of the whole family is changing. Negative emotions accumulate and social contacts are disturbed. Economic and social difficulties, lack of time and lack of knowledge and skills are major problems in families with patients in need of palliative care. Respondents want to participate in training for the care of the sick, need professional help and support to ensure a better quality of life for their close and normal family functioning.

Palliative care of cancer survivors

2015 ◽  
pp. 661-670
Author(s):  
Mary S. McCabe ◽  
Stacie Corcoran
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Diagnosis ◽  
Childhood Cancer Survivors ◽  
The Family ◽  
Heavy Burden ◽  
Optimal Quality

Being told you are cancer-free does not mean you are free of the consequences of the disease. Seventy-six percent of cancer survivors are over age 60 years and have coexisting medical conditions that complicate posttreatment recovery to maximum health. Childhood cancer survivors also carry a heavy burden of medical and psychological problems resulting from their experience with cancer. Cancer diagnosis and treatment affects the family as well as the patient. Improvements are needed in the coordination of care for cancer survivors to assure optimal quality of life.

Quality of life in terminally ill patients – a challenge for future research

2013 ◽  
Vol 21 (3) ◽  
Author(s):  
Cornelia Meffert ◽  
Gerhild Becker
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Studies ◽  
Palliative Medicine ◽  
Pain Therapy ◽  
Unsolved Problem ◽  
Terminally Ill ◽  
Future Research ◽  
Outcome Criterion

SummaryRecent statistics reveal a substantial and even growing need for palliative care in present-day society. Providing adequate pain therapy remains a largely unsolved problem, mainly because of the small number of clinical studies in palliative medicine. Hence, clinical research is urgently needed – and therefore suitable tools to measure outcomes must be developed. Contrary to typical clinical studies, the usual outcome parameters such as decreased mortality and/or morbidity are unsuitable. Future research should focus on developing an instrument which allows to measure quality of life as the central outcome criterion of clinical studies in palliative medicine.

Improving the quality of life of terminally ill oncological patients: the example of palliative care at Hospice Villa Speranza

2013 ◽  
Vol 9 (6) ◽  
pp. 771-776 ◽  
Author(s):  
Adriana Turriziani ◽  
Gennaro Attanasio ◽  
Santina Cogliandolo ◽  
Francesco Scarcella ◽  
Luisa Sangalli ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Terminally Ill ◽  
Oncological Patients

scholarly journals Self-efficacy, social support, and quality of life among primary family-member caregivers of patients with cancer in Thailand

2018 ◽  
Vol 32 (2) ◽  
pp. 111-122 ◽  
Author(s):  
Anchalee Warapornmongkholkul ◽  
Nopporn Howteerakul ◽  
Nawarat Suwannapong ◽  
Nopadol Soparattanapaisarn
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Family Member ◽  
Self Efficacy ◽  
Perceived Social Support ◽  
Content Type ◽  
Patients With Cancer ◽  
The Family ◽  
Primary Family

Purpose In Thailand, most patients with cancer primarily receive in-home care from their family members. However, information regarding the quality of life (QoL) of the primary family-member caregivers is scarce. The purpose of this paper is to assess primary family-member caregivers’ QoL and its association with self-efficacy and social support using a Thai version of the Caregiver Quality of Life Index-Cancer (CQOLC). Design/methodology/approach This hospital-based cross-sectional study was performed at a teaching hospital in Bangkok. Questionnaires were administered to 178 primary family-member caregivers of patients with cancer between June 2015 and July 2016, and their QoL was measured using a Thai translation of the CQOLC made by the research team. Hierarchical multiple regression analyses were performed using SPSS software (version 18). Findings Approximately 79.8 percent of primary family-member caregivers were female, 86.0 percent were 18-51 years old. In total, 52.8 percent reported having a good QoL, 60.1 percent reported a moderate level of perceived self-efficacy, and 56.7 percent reported a high level of perceived social support for providing care. Primary family-member caregivers, who provided care for male cancer patients and were co-responsible for covering the patient’s cost of care, had a lower level of perceived self-efficacy and perceived social support. They also reported having poorer QoL. The patients’ characteristics were more strongly associated with the family-member caregivers’ QoL, than the family-member caregivers’ characteristics, perceived self-efficacy, and perceived social support. Originality/value Approximately 50 percent of primary family-member caregivers reported having a good QoL. Healthcare providers should incorporate the self-efficacy concept to help improve primary family caregiver’s self-efficacy to provide care to patients with cancer, especially for individuals who are caring for male patients, and provide counseling for primary family-member caregivers regarding ways to obtain the necessary social and financial support to improve their QoL.

Palliative care in the Philippines

2015 ◽  
pp. 1160-1167
Author(s):  
Ayda G. Nambayan ◽  
Henry U. Lu
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Healthcare Providers ◽  
The Philippines ◽  
Life And Death ◽  
The Family ◽  
Hospice Palliative Care

Culture, traditions, beliefs, and religion play an important part in every Filipino‘s life and death. In addition, the family is central and carries a significant importance especially in healthcare decisions. Families are generally very involved in caring for their loved ones who are dying and equally expect healthcare providers to do the same. These are the hospice/palliative care activists who, against all odds, continuously try to improve their patients‘ quality of life and provide them with elements of dignity.

Psychiatric and Psychological Interventions for the Control of Pain and Selected Physical Symptoms

2014 ◽  
pp. 103-114
Author(s):  
William S. Breitbart
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Psychiatric Disorders ◽  
Advanced Cancer ◽  
Terminally Ill ◽  
Physical Symptoms ◽  
Diagnosis And Treatment ◽  
Psychological Interventions ◽  
Assessment And Treatment

In addition to the diagnosis and treatment of psychiatric disorders in palliative care settings, pain and other troublesome physical symptoms must also be aggressively treated in efforts aimed at the enhancement of the patient’s quality of life. These symptoms must be assessed by the psycho-oncologist concerned with the assessment and treatment of affective and other syndromes in the terminally ill population. This chapter provides a brief overview of the prevalence, assessment, and management of the commonly encountered, distressing physical symptoms such as pain, insomnia, and nausea among patients with advanced cancer.

Surgical Palliative Care

2019 ◽  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Supportive Care ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Surgical Care ◽  
Serious Illness ◽  
Moral Framework ◽  
Time Of Presentation

Surgical Palliative Care is a synoptic presentation about the treatment of suffering and the promotion of quality of life for seriously or terminally ill patients under surgical care. The contributors include surgeons of different specialties who are leaders in the new specialty of surgical palliative care. Surgical palliative care encompasses supportive care for patients and families with serious illness that includes disease-directed treatment and supportive care for patients and families with terminal illness not seeking disease-directed treatment. The book commences with chapters covering the historical, conceptual and moral framework for surgical palliative care followed by chapters that follow the trajectory of the patient/family encounter with surgical care, from the time of presentation and proceeding to intraoperative and post-operative periods. The unique problems of several surgical subspecialties such as trauma and burns, thoracic surgery, and the transplantation are addressed in individual chapters.

Comparison of Patient Self-Reported Quality of Life and Health Care Professional-Assessed Symptoms in Terminally ill Patients With Cancer

2020 ◽  
pp. 104990912094415
Author(s):  
Chikako Matsumura ◽  
Nanako Koyama ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
Takehisa Nomura ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Terminally Ill ◽  
Patients With Cancer ◽  
Terminally Ill Patients ◽  
Patient Reported ◽  
Exact Agreement

Background: Few studies evaluated whether health care professionals accurately assess several symptoms for patients with cancer in palliative care units. We determined the agreement level for several symptoms related to quality of life (QOL) between patient-reported QOL assessment and health care professional-assessed symptoms based on the Support Team Assessment Schedule (STAS). Method: An observational study was performed with terminally ill patients with cancer hospitalized in the palliative care unit between June 2018 and December 2019. Patients and health care professionals independently assessed 7 symptoms at the time of hospitalization and after 1 week. Patients completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL). In examining the proportions of exact agreement, “exact agreement” referred to the pairs of the scores (QLQ-C15-PAL vs STAS) being (1 vs 0), (2 vs 1), (3 vs 2 or 3), or (4 vs 4). The relationships of physical functioning between QLQ-C15-PAL and Palliative Performance Scale (PPS) were examined. Results: Of 130 patients, approximately 60% had PPS scores from 40 to 60. The highest mean score on QLQ-C15-PAL was for fatigue (63.8). The exact agreement on symptoms between patients and health care professionals ranged from 15.4% (fatigue) to 57.7% (nausea and vomiting). The mean of the transformed QLQ-C15-PAL and proportions of exact agreement were negatively correlated ( R 2 = 0.949, P < .05). The physical function scores in QLQ-C15-PAL for each PPS group showed no differences. Conclusion: We expect patient-reported outcomes including QLQ-C15-PAL to be added to health care professionals’ assessment of serious symptoms such as fatigue in terminally ill patients with cancer.

scholarly journals Palliative Care in Pediatrics: Perception of the Multi-Professional Team

2020 ◽  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Pediatric Patients ◽  
Public University ◽  
University Hospital ◽  
Chronic Pulmonary Disease ◽  
The Family ◽  
Pain And Suffering ◽  
Ischemic Encephalopathy

Introduction: Palliative care with the Cicely Saunders, in the 20th century and consists of the care and assistance to the patient and their families, ensuring better quality of life, aiming at controlling pain and suffering, with attention to physical aspects, spiritual, social and psychic. Objectives: To approach the respiratory and motor care of a pediatric patient in palliative care by nursing and physiotherapy, restricted to the bed, with non-progressive Hypoxic-Ischemic Encephalopathy, with metabolic syndrome under investigation, chronic pulmonary disease dependent on oxygen, alternating macronebulization and ventilatory prosthesis (PSV) for nocturnal breathing comfort. Methodology: This is an experience report lived by residents in a public university hospital in Rio de Janeiro, during the month of June 2018 in the pediatric ward. Through multidisciplinary action, interventions were carried out to improve the patient’s condition and minimize pain aspects through the care of the patient’s respiratory and motor functions and maternal guidance. Results and Discussion: Bearing in mind that palliative care focuses on minimizing pain and suffering, the actions presented above are in line with most of the published studies relating palliative care and improving quality of life with reducing the suffering of child and family members, guided by the bioethical principles of beneficence and non-maleficence. Conclusion: Through the applied procedures, greater independence of the ventilatory prosthesis was found, enabling the strengthening of the family bond, concomitant to the learning of the professionals involved related to palliative care in pediatric patients.

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