Family Narratives About Providing End-of-Life Care at Home

2021 ◽  
pp. 107484072110255
Author(s):  
Jesús Martín-Martín ◽  
Mercedes Pérez-Díez-del-Corral ◽  
Maddi Olano-Lizarraga ◽  
Socorro Valencia-Gil ◽  
María Isabel Saracíbar-Razquin
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Member ◽  
Narrative Analysis ◽  
Interpersonal Relationship ◽  
Well Being ◽  
Individual Interviews ◽  
The Family ◽  
The Stability ◽  
The Impact

Currently, the dying process in Spain is moving to the home environment where responsibility for care falls largely on the family, thereby challenging and testing the stability of the family. Previous research has focused on the impact of illness on the primary caregiver; therefore, a knowledge gap exists. This study aimed to understand families’ unitary experiences of providing home care to terminally ill family member. Using the “ Model of Interpersonal Relationship Between the Nurse and the Person/Family Cared For,” narrative research included family and individual interviews with nine families (9 groups/23 individuals). Thematic narrative analysis was used to interpret the interviews. The results highlight the impact of illness on family well-being as a whole. Family members often felt abandoned while caring for an ill family member and wished to be cared for themselves. However, their immediate community and the nurses caring for their ill family member neglected them. A paradigm shift is required by society and in home care at the end of life to better support the family.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

scholarly journals Caring Near and Far by Connecting Community-Based Clients and Family Member/Friend Caregivers Using Passive Remote Monitoring: Protocol for a Pragmatic Randomized Controlled Trial

10.2196/15027 ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. e15027
Author(s):  
Lorie Donelle ◽  
Sandra Regan ◽  
Michael Kerr ◽  
Merrick Zwarenstein ◽  
Michael Bauer ◽  
...  
Keyword(s):  
Older Adults ◽  
Home Care ◽  
Family Member ◽  
Controlled Trial ◽  
Term Care ◽  
Pragmatic Randomized Controlled Trial ◽  
Randomized Controlled ◽  
The Family ◽  
The Impact

Background Significant chronic disease challenges exist among older adults. However, most older adults want to remain at home even if their health conditions challenge their ability to live independently. Yet publicly funded home care resources are scarce, private home care is expensive, and family/friend caregivers have limited capacity. Many older adults with chronic illness would require institutional care without the support from family member/friend caregivers. This role raises the risk of physical health problems, stress, burnout, and depression. Passive remote monitoring (RM), the use of sensors that do not require any action by the individual for the system to work, may increase the older adult’s ability to live independently while also providing support and peace of mind to both the client and the family member/friend caregiver. Objective This paper presents the protocol of a study conducted in two provinces in Canada to investigate the impact of RM along with usual home care (the intervention) versus usual home care alone (control) on older adults with complex care. The primary outcome for this study is the occurrence of and time to events such as trips to emergency, short-term admission to the hospital, terminal admission to the hospital awaiting admission to long-term care, and direct admission to long-term care. The secondary outcomes for this study are (1) health care costs, (2) client functional status and quality of life in the home, (3) family/friend caregiver stress, and (4) family/friend caregiver functional health status. Methods The design for this study is an unblinded pragmatic randomized controlled trial (PRCT) with two parallel arms in two geographic strata (Ontario and Nova Scotia). Quantitative and qualitative methodologies will be used to address the study objectives. This PRCT is conceptually informed by the principles of client-centered care and viewing the family as the client and aims at providing supported self-management. Results This study is supported by the Canadian Institutes for Health Research. A primary completion date is anticipated in fall 2022. Conclusions Findings from this real-world rigorous randomized trial will support Canadian decision-makers, providers, and clients and their caregivers in assessing the health, well-being, and economic benefits and the social and technological challenges of integrating RM technologies to support older adults to stay in their home, including evaluating the impact on the burden of care experienced by family/friend caregivers. With an aging population, this technology may reduce institutionalization and promote safe and independent living for the elderly as long as possible. Trial Registration International Standard Randomised Controlled Trial Number (ISRCTN) 79884651; http://www.isrctn.com/ISRCTN79884651 International Registered Report Identifier (IRRID) DERR1-10.2196/15027

Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth

Dementia ◽  
2020 ◽  
pp. 147130122097078
Author(s):  
Bruce D Walmsley ◽  
Lynne McCormack
Keyword(s):  
Home Care ◽  
Family Member ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Study ◽  
Care Home ◽  
Family Members ◽  
Well Being ◽  
Aged Care ◽  
Structured Interviews ◽  
The Impact

Background and Objectives Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods This phenomenological study sought the ‘lived’ experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members’ psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant’s role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

scholarly journals Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Susanne A. Elsner ◽  
Sam S. Salek ◽  
Andrew Y. Finlay ◽  
Anna Hagemeier ◽  
Catherine J. Bottomley ◽  
...  
Keyword(s):  
Factor Analysis ◽  
Family Member ◽  
Internal Consistency ◽  
Outcome Measure ◽  
Test Validity ◽  
Family Members ◽  
German Version ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Background The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods The questionnaire was translated from English into German (forward, backward, four independent translators). Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070.

Experience and impact of the 1-2-3 magic parent programme for children with ADHD on the family unit from the mothers’ perspectives: A narrative analysis

2021 ◽  
pp. 136749352110399
Author(s):  
Stephanie Allen ◽  
Stephen K Bradley ◽  
Eileen Savage
Keyword(s):  
Narrative Analysis ◽  
Family Members ◽  
Study Data ◽  
Unintended Consequences ◽  
Structured Interviews ◽  
Children With Adhd ◽  
Family Unit ◽  
The Family ◽  
Narrative Constructions ◽  
The Impact

Parent programmes are often used in the clinical management of children with ADHD. Research into parent programmes has predominantly been concerned with their effectiveness and much less attention has been paid to the impact that they may be having on the family and the inter-relationships between family members. This study explores the perspectives and experiences of parents of children with ADHD, who participated in a parent programme, including its impact on the family unit. A purposive sample of six mothers of children with ADHD who completed a 1-2-3 Magic parent programme in Ireland was invited to take part in this qualitative study. Data were collected by means of individual in-depth, semi-structured interviews and a narrative inquiry approach further informed analysis of the interview data. Two major narrative constructions of experience: ‘parent programme as positive’ and ‘parent programme as negative’ were identified. Outcomes from this study illustrated some unintended consequences caused by the parent programme (i.e. sibling rivalry and conflict arising between family members). Mothers believed that the parent programme was a beneficial intervention, but it was not without its flaws and they felt it was helpful for their family when used in conjunction with other supports and mediations.

Health Information Systems and Their Usefulness Among the Women Folk of Kanyakumari District, India

2018 ◽  
pp. 36-49
Author(s):  
R. Gnanabai
Keyword(s):  
Health Information ◽  
Information Needs ◽  
Health Information System ◽  
Well Being ◽  
Individual Growth ◽  
Growth And Survival ◽  
The Family ◽  
The Status ◽  
The Impact ◽  
Women In India

This chapter describes how health is the most precious component for the happiness and all-round development of human being in the society. Alongside this, information is an important resource for individual growth and survival. Therefore, a Health Information System (HIS) is a system for collecting/processing of data from various sources, and using the information for policy-making and management of health services. This chapter discusses health literacy and its association with health information needs and health information literacy, the status of women in India and their influence in the well-being of the family, and the impact of HIS. This chapter also proves that with enough data obtained from the women of Kanyakumari District in India, the government's policy needs to be directed towards women for the success of its health-care programmes.

Impact on the family

2021 ◽  
pp. 111-125
Author(s):  
Veronica Dussel ◽  
Barbara Jones
Keyword(s):  
Social Care ◽  
Family Members ◽  
Well Being ◽  
Family Unit ◽  
Health And Social Care ◽  
The Family ◽  
Threatening Condition ◽  
Life Threatening ◽  
Limiting Condition ◽  
The Impact

In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.

Children and Adolescents with Chronic Health Conditions

2017 ◽  
pp. 145-155
Author(s):  
Alina Morawska
Keyword(s):  
Well Being ◽  
Health Condition ◽  
Chronic Health Conditions ◽  
Health Conditions ◽  
Triple P ◽  
Childhood Health ◽  
Chronic Health ◽  
Parenting Support ◽  
The Family ◽  
The Impact

Chronic childhood health conditions are common and significantly affect the child and family. This chapter begins by describing the central role parents play in children’s health outcomes and illness management and the impact the child’s health condition has on parents and the family. Few parenting interventions have been evaluated, and most focus on medical aspects rather than psychosocial factors related to child and family well-being. Existing approaches to parenting support are described, followed by an exploration of the evidence for Triple P interventions. Recent research using Positive Parenting for Healthy Living, a brief parenting intervention for parents with children with chronic health conditions, is showing promising outcomes. Policy and service implications of recent research are summarized.

Benefits of a support programme for family caregivers of patients at the end of life: A randomised controlled trial

2020 ◽  
pp. 135910532094499
Author(s):  
Ana Lucila Soto-Rubio ◽  
Selene Valero-Moreno ◽  
Marián Pérez-Marín
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Psychological Intervention ◽  
Controlled Trial ◽  
Intervention Programme ◽  
Care Recipients ◽  
Support Programme ◽  
The Family ◽  
Randomised Controlled ◽  
The Impact

This study aims to analyse the impact that a psychological intervention programme has on the emotional state of family caregivers of patients at the end of life. The study is longitudinal with two arms (control and experimental). Data was collected from 154 primary family caregivers of patients at the end of life as well as from their respective 154 care-recipients. The intervention programme has shown its effectiveness in reducing anxiety, emotional distress and burden in the family caregivers of end-of-life patients. A reduction of anxiety of patients whose family caregivers participated in the intervention was also observed.

The budget of a Corsican stem family

2002 ◽  
Vol 17 (2) ◽  
pp. 233-251 ◽  
Author(s):  
ANTOINE MARCHINI
Keyword(s):  
Detailed Analysis ◽  
Family Member ◽  
Animal Husbandry ◽  
Well Being ◽  
Economic Activities ◽  
Single Item ◽  
Family Household ◽  
The Family ◽  
Age And Sex ◽  
Economic Well Being

This article provides a detailed analysis of the income and expenditure of a stem family household from Bastelica, Corsica, based on information collected in 1867 and 1887 according to the scheme recommended by Frédéric Le Play. The budget indicates the work undertaken by each member of the family and which economic activities were most valuable to the family in terms of the income they generated and the level of profit. The primary resource of the family was its members, as the family used almost no non-family labour. The composition of the household, and the distribution of its members in terms of age and sex, were therefore critical for its economic well-being. Members of the family contributed their labour according to their sex, age and place within the household. Males were better paid than females but each son received more than his father and the daughters were better paid than their mother. Apart from the father, the less well paid the family member, the longer the time they were at work. In addition, the two highly paid sons were unemployed for more than half of the year. This provided a reserve of labour in the event of a rise in the ratio of consumers to workers within the family. The economy of the family was based on the exploitation of its patrimony and on animal husbandry. Food constituted the largest single item of expenditure but the diet of this family did not provide the 2,800 calories of the average diet in France between 1855 and 1874.

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