Palliative Care at Home: Reflections on HIV/AIDS Family Caregiving Experiences

1998 ◽  
Vol 14 (2) ◽  
pp. 14-22 ◽  
Author(s):  
Kelli I. Stajduhar ◽  
Betty Davies
Keyword(s):  
Palliative Care ◽  
Qualitative Methods ◽  
Family Caregiving ◽  
Family Members ◽  
Loved One ◽  
The Family ◽  
Care At Home ◽  
Depth Interviews ◽  
Hiv Aids ◽  
At Home

This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.

scholarly journals Caring and Conflict-Palliative Care in the Armed Forces: The Challenges for Caregivers

2021 ◽  
Vol 0 ◽  
pp. 1-14
Author(s):  
Savita Butola ◽  
Sushma Bhatnagar ◽  
Fiona Rawlinson
Keyword(s):  
Palliative Care ◽  
Rural Areas ◽  
Family Members ◽  
Community Support ◽  
Armed Forces ◽  
Structured Interviews ◽  
Transfer Policy ◽  
Remote Areas ◽  
Care At Home ◽  
At Home

Objectives: In India, Palliative care remains inaccessible, especially in remote areas. This study aimed at exploring the experience of caregivers related to arranging palliative care at home, for personnel and family members of an armed force. Materials and Methods: Qualitative study based on thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members. Results: Lack of palliative care in rural areas makes arranging home care challenging for Indian caregivers, especially in armed forces. The families stay alone and personnel cannot be there to look after loved ones. Constraints of leave, financial and legal problems, frequent movement and social isolation disrupt care as well as family and community support systems, leading to psycho-social problems and stress for the serving personnel as well as families. Educating staff, integrating palliative care into existing medical services, coordinating with other agencies to increase awareness and provide care at home, access to opioids, timely leave, reimbursement of expenses, increased family accommodation, guidance about benefits, and considerate implementation of transfer policy can help mitigate some of their problems. Conclusion: These caregivers face physical exhaustion, psycho-social, financial, legal, and spiritual issues- some common to all rural Indians and others unique to the armed forces. Understanding their experiences will help the providers find solutions, especially in relation to the unique needs of the men in uniform.

scholarly journals PENGALAMAN KELUARGA DALAM MERAWAT DEKUBITUS

2017 ◽  
Vol 2 (1) ◽  
pp. 11
Author(s):  
Rita Sari
Keyword(s):  
Family Members ◽  
Deep Understanding ◽  
Phenomenological Approach ◽  
Pressure Sores ◽  
The Family ◽  
Long Time ◽  
Field Notes ◽  
Written Questions ◽  
Depth Interviews ◽  
At Home

Immobilization is a problem faced by patients with chronic illness, the patients is very weak and paralyzed patients in a long time. This study have purpose  to gain a deep understanding of the experience of families in caring for family members is immobilized with pressure sores at home. This study used qualitative methods. Participants are families who care for patients at home who are immobilized with pressure sores. Collecting data with in-depth interviews by means of instrument is the researcher's own self, written questions as an interview, used recording devices and used field notes.  Criterion sampling by taking 6 participants. Analysis of data used a phenomenological approach. The results showed that the family had a positive experience; Can be more patient, and assume that caring for a sick family member has its own challenges, being able to be with other families in caring for patients, being able to give affection and obligation as a child to parents can help take care of it. There was also an unpleasant (negative) family experience during the care of sick family members, the family felt tired, not strong and bored during patient care. The conclusion of the study is that families have positive and negative experiences in caring for family members with decubitus

Family caregiver's experiences in caring for a patient with terminal cancer at home in Japan

2007 ◽  
Vol 5 (4) ◽  
pp. 389-395 ◽  
Author(s):  
Tomomi Sano ◽  
Etsuko Maeyama ◽  
Masako Kawa ◽  
Yuki Shirai ◽  
Mitsunori Miyashita ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Family Members ◽  
Primary Caregivers ◽  
Palliative Care Service ◽  
Terminal Cancer ◽  
Time Of Death ◽  
The Family ◽  
Personal Qualities ◽  
At Home

ABSTRACTObjectives:The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death.Methods:One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%).Results:Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive.Significance of results:Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.

scholarly journals The Family Context of Care in HIV/AIDS: A Study from Mumbai, India

2015 ◽  
Author(s):  
Premilla D'Cruz
Keyword(s):  
Family Caregiving ◽  
Program Planning ◽  
Empirical Work ◽  
Family Values ◽  
Family Context ◽  
Caregiving System ◽  
The Family ◽  
Depth Interviews ◽  
The Continuum ◽  
Hiv Aids

Though the continuum of care model has been adopted in HIV/AIDS intervention, there is little empirical work documenting the experiences of caregiving families. Addressing this gap, a study on family caregiving and care receiving was undertaken in Mumbai, India. In-depth interviews were conducted with seven seropositive caregivers, seven seropositive care receivers and five seronegative caregivers. Thematic analysis of the data was conducted, yielding a number of key themes. This paper discusses the key theme of the family context of care which includes the caregiving system, family values, perceived mode of infection, gender of the seropositive person, and class. Implications of the findings for policy and program planning are discussed.

scholarly journals The importance of family caregiving to achieving palliative care at home

Medicine ◽  
2017 ◽  
Vol 96 (46) ◽  
pp. e8721 ◽  
Author(s):  
Akihiko Ozaki ◽  
Masaharu Tsubokura ◽  
Claire Leppold ◽  
Toyoaki Sawano ◽  
Manabu Tsukada ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregiving ◽  
Care At Home ◽  
At Home

Trends in Hospital Utilization in AIDS Care 1987–1991: Implications for Palliative Care

1992 ◽  
Vol 8 (4) ◽  
pp. 22-29 ◽  
Author(s):  
Irene L. Goldstone
Keyword(s):  
Palliative Care ◽  
Program Development ◽  
Social Factors ◽  
Terminal Care ◽  
Hospital Utilization ◽  
Institutional Settings ◽  
Canadian Experience ◽  
Care At Home ◽  
Hiv Aids ◽  
At Home

St. Paul's Hospital, Vancouver has the largest Canadian experience of the care of persons with HIV/AIDS. This article reviews St. Paul's experience during the period 1987–1991, with particular emphasis on issues in palliative AIDS care. These issues include the implications of prolonged palliative care at home, precipitous readmissions to hospital for terminal care, and long-stay terminal admissions. Aspects of treatment and social factors which have an impact on palliative AIDS care are also identified. The implications for program development in both community and institutional settings are discussed.

scholarly journals The life scenarios of family who have autistic child at home

2019 ◽  
Vol 2 (1) ◽  
pp. 1-9
Author(s):  
Cau Kim Jiu ◽  
Somporn Rungreangkulkij
Keyword(s):  
Family Members ◽  
Ethnographic Study ◽  
Autistic Children ◽  
Group Discussions ◽  
The Family ◽  
Care Activity ◽  
Deep Listening ◽  
Depth Interviews ◽  
Ways Of Life ◽  
At Home

Living with autism is not easy for the autistic children themselves and their family members. Especially the family members who are also the main caregivers. This ethnographic study aimed to describe the ways of life of families who have children with autism at home. Data were collected through participant observations, focus group discussions and in-depth interviews. There were 20 families as key informants taken by purposive sampling who consist of mothers, grandmothers, and siblings. The data were analyzed by thematic analysis. There were four family life scenarios of family living with autistism including: 1) basic self care activity, 2) locking doors to protect the autistic children, 3) woman act as a main caregiver, 4) risk of child abuse, and 5) supporting from spouse and other family members. Main caregivers risk psychological, physical and social problems. Nurses should provide counseling to the main caregiver by deep listening to their concerns and teaching them how to manage stress. In addition, caregivers need supports from the family member particularly the husband.

Sleeping with One Eye Open: The Sleep experience of Family Members Providing Palliative Care at Home

2011 ◽  
Vol 27 (2) ◽  
pp. 69-78 ◽  
Author(s):  
Brenda Hearson ◽  
Susan McClement ◽  
Diana E. McMillan ◽  
Michael Harlos
Keyword(s):  
Palliative Care ◽  
Family Members ◽  
Care At Home ◽  
At Home

scholarly journals Nursing consultation practice for psychosocial problems on heart failure patiens in hospital-based outpatient clinic

2021 ◽  
Vol 10 (Supplement_1) ◽  
Author(s):  
ERWIN Erwin ◽  
ELLY Nurachmah ◽  
TUTI Herawati
Keyword(s):  
Heart Failure ◽  
Support System ◽  
Family Environment ◽  
Outpatient Clinic ◽  
Social Problems ◽  
Family Members ◽  
Psychosocial Problems ◽  
The Family ◽  
Hospital Outpatients ◽  
At Home

Abstract Funding Acknowledgements Type of funding sources: None. Background The client"s condition for heart failure requires environmental support to be able to be confident and able to carry out activities according to the directions given while the patient is undergoing treatment in the hospital, but sometimes in the client"s time period at home there will be situations where patients may experience complaints or changes in conditions that can affect his cardiovascular status. Purpose this study is conducted to identify psychological and social problems and needs of heart failure clients with a qualitative approach of observation, invite individuals or families to participate, motivate individuals to develop the potential to maintain optimal health. In addition, this study was conducted to assess the need and effectiveness of the practice of consulting for heart failure nursing in hospital outpatients Method qualitative observation approach in nursing consulting practice using steps of the nursing process consisting of an assessment of physical, psychological and social conditions and client needs, formulating problems, making plans and taking care of actions in accordance with the problems that exist by nurses in the outpatient clinic at home sick. Results Clients who came to the outpatient clinic had various  psychological and social problems. From the observations and interviews it was found that psychological and social problems were the most common causes. Psychosocial problems arise due to the client himself, life companion (husband or wife) and family members who live together. So that the family system to support clients with heart failure is not awakened. Health education and promotion to clients, life companions, and family members of heart failure clients who live at home are needed when the client controls health to maintain the client"s health support system while at home. All clients and families in this study stated that the practice of nursing consultations in hospital outpatients is very helpful for clients and families to improve the situation they face. Conclusion the practice of nursing consultations can identify the problems and needs of clients and families. Strengthening the client support system for heart failure at home is needed so that psychological and social problems can be reduced when the client is in the family environment. Nursing consultation practices at outpatient hospitals are needed to help motivate clients and families in maintaining and increasing care and support for clients who suffer from heart failure while at home. Psychosocial problems The client felt anxious, lack of attention, complained sleeping difficulty, often forgot taking medicine, and forgot managing fluid intakeThe client,while at home, was fastidious and wanted to many, was difficult to be told or managed, was always suspicious with their spouse"s activity easily got angry or temperamental, the client"s child felt annoyed because the client acted annoying, the client"s spouse felt annoyed because the client was impatient and temperamentalPsychological, and social problems in heart failure patients

scholarly journals Development and validation of the Family Decision-Making Self-Efficacy Scale

2009 ◽  
Vol 7 (3) ◽  
pp. 315-321 ◽  
Author(s):  
Marie T. Nolan ◽  
Mark T. Hughes ◽  
Joan Kub ◽  
Peter B. Terry ◽  
Alan Astrow ◽  
...  
Keyword(s):  
Decision Making ◽  
Self Efficacy ◽  
Family Members ◽  
Terminally Ill ◽  
Loved One ◽  
The Family ◽  
Family Decision ◽  
Patient Scenario ◽  
Family Decision Making ◽  
Test Retest Reliability

AbstractObjective:Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.Methods:On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.Results:A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.Significance of results:The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

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