Impact of co-facilitated information programmes on outcomes for service users and family members: the EOLAS programmes (paper 2)

2016 ◽  
Vol 34 (1) ◽  
pp. 29-37 ◽  
Author(s):  
A. Higgins ◽  
D. Hevey ◽  
P. Gibbons ◽  
C. O’ Connor ◽  
F. Boyd ◽  
...  
Keyword(s):  
Mixed Method ◽  
Family Members ◽  
Well Being ◽  
Positive Outcomes ◽  
Mutual Support ◽  
Structured Interviews ◽  
Irish Context ◽  
Mixed Method Design ◽  
Qualitative Component ◽  
The Impact

ObjectiveThe present study evaluated the impact on psychosocial outcome of parallel clinician and peer-led information programmes for people with a diagnosis of schizophrenia and bipolar disorder and for family members within an Irish context.MethodsA sequential mixed method design was used. Quantitative data were collected using pre- and post-programme questionnaires followed by an integrated qualitative component involving semi-structured interviews after the programme. The questionnaires assessed knowledge, attitudes towards recovery, hope, support, advocacy and well-being. Interviews with participants, facilitators and project workers explored their experiences and views of the programme.FindingsWhile a number of the questionnaires did not show a statistically significant change, findings from the interviews suggest that the1 programmes had a number of positive outcomes, including increases in perceived knowledge, empowerment and support. Participants in both programmes valued the opportunity to meet people in similar circumstances, share their experiences, learn from each other and provide mutual support.ConclusionThe EOLAS programmes offer a novel template for communication and information sharing in a way that embodies the principles of collaboration and offers users and families a meaningful opportunity to become involved in service design, delivery and evaluation.

scholarly journals The ties that bind us: how existing relationships, health and gender shape family care in chronic obstructive pulmonary disease

2012 ◽  
Vol 2 (1) ◽  
pp. 6 ◽  
Author(s):  
Janice G. Gullick ◽  
M. Colleen Stainton
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Family Relationships ◽  
Family Members ◽  
Well Being ◽  
The Body ◽  
Chronic Obstructive ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
The Impact

Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty&rsquo;s existential philosophy of the body provided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a difference in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and perception of care burden. The stories highlight the self-perceived need for women carers to be <em>conscious micro-managers</em> of illness. Male family members would care alongside, lending support and caring in a reactive way as specific needs or crises arose. Caring in COPD required a <em>binding vigilance</em>; a constant need of the carer to monitor the physical and emotional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and differences in family caring between COPD and other chronic illnesses, and to further understand the specific needs of male carers.

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 EFFECT OF ADVERSE CHILDHOOD EXPERIENCES ON DAILY SUPPORT TO FAMILY AND EMOTIONAL WELL-BEING IN ADULTHOOD

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S235-S235
Author(s):  
Jooyoung Kong ◽  
Yin Liu ◽  
David Almeida
Keyword(s):  
Negative Affect ◽  
Family Relationships ◽  
Emotional Support ◽  
Adverse Childhood Experiences ◽  
Family Members ◽  
Well Being ◽  
National Study ◽  
Childhood Experiences ◽  
Adverse Childhood ◽  
The Impact

Abstract Extensive evidence suggests that adverse childhood experiences (ACEs) can lead to negative health effects across a lifetime. This study examines the impact of ACEs on the frequency of providing daily support (i.e., unpaid assistance, emotional support, and disability-related assistance) to family members and the moderating effects of ACEs in the association between providing daily support to family and daily negative affect. Using the National Study of Daily Experiences II, we analyzed a total of 14,912 daily interviews from 2,022 respondents aged 56 on average. Key results showed that a greater number of ACEs were associated with providing more frequent emotional support to family. We also found the significant interaction effect that adults with more ACEs showed greater negative affect on the days when they provided assistance to family members with disabilities. The findings underscore the long-term negative impact of ACEs on daily well-being in the context of family relationships.

scholarly journals “You run out of hope:” An Exploration of Low-Income Parents’ Experiences with Food Insecurity using Photovoice

2021 ◽  
pp. 1-21
Author(s):  
Payge Lindow ◽  
Irene H. Yen ◽  
Mingyu Xiao ◽  
Cindy W. Leung
Keyword(s):  
Food Insecurity ◽  
San Francisco ◽  
Low Income ◽  
Eating Behaviors ◽  
Comparative Method ◽  
Well Being ◽  
Structured Interviews ◽  
Unhealthy Eating ◽  
Low Income Families ◽  
The Impact

ABSTRACT Objective: Using an adaption of the Photovoice method, this study explored how food insecurity affected parents’ ability to provide food for their family, their strategies for managing household food insecurity, and the impact of food insecurity on their well-being. Design: Parents submitted photos around their families’ experiences with food insecurity. Afterwards, they completed in-depth, semi-structured interviews about their photos. The interviews were transcribed and analyzed for thematic content using the constant comparative method. Setting: San Francisco Bay Area, California, USA. Subjects: 17 parents (14 mothers and 3 fathers) were recruited from a broader qualitative study on understanding the experiences of food insecurity in low-income families. Results: Four themes were identified from the parents’ photos and interviews. First, parents described multiple aspects of their food environment that promoted unhealthy eating behaviors. Second, parents shared strategies they employed to acquire food with limited resources. Third, parents expressed feelings of shame, guilt, and distress resulting from their experience of food insecurity. And finally, parents described treating their children to special foods to cultivate a sense of normalcy. Conclusions: Parents highlighted the external contributors and internal struggles of their experiences of food insecurity. Additional research to understand the experiences of the food-insecure families may help to improve nutrition interventions targeting this structurally vulnerable population.

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.

Families Living with Mental Illness

2016 ◽  
Vol 4 (1) ◽  
Author(s):  
Aditi Rana
Keyword(s):  
Mental Illness ◽  
Mental Health Professionals ◽  
Mentally Ill ◽  
Family Members ◽  
Primary Caregivers ◽  
Well Being ◽  
Structured Interviews ◽  
Indian Context ◽  
The Family ◽  
Partner Research

Mental illness is a growing reality of our times. Usually in a typical Indian family, the parents act as the primary caregivers for the child suffering from mental disorder. For adult sufferers, it can also be siblings or offspring, and  at times even spouse or partner. Research on the experiences of families of mentally ill people has been minimal in the Indian context. This study aims to shift the focus from the mentally ill patients to the suffering of the caregivers and families of the patient keeping in mind the interconnected well being of the family in a collectivist culture. Following a qualitative approach, narratives have been taken from the family members of mentally ill (narratives of 8 families with mentally ill person) and also the mental health professionals (two) through semi structured interviews. The findings suggest that the family members suffer from a significant amount of stress accompanied by burden. Also, they feel secluded from the society and experience a lack of assistance to deal with the mentally ill member of the family.

The Impact on Well-Being of Experiences at Cultural Events

2021 ◽  
Author(s):  
Valentina Gorchakova ◽  
Kenneth F. Hyde
Keyword(s):  
Social Interactions ◽  
Well Being ◽  
Emotional Engagement ◽  
Structured Interviews ◽  
Art Galleries ◽  
Special Events ◽  
Research Findings ◽  
Favourable Environment ◽  
The Impact

Major international cultural exhibitions, often referred to as touring ‘blockbuster’ exhibitions (TBEs), are arguably among the most stimulating and engaging event experiences. The role of orchestrating an experience that is meaningful and memorable has captured the attention of scholars in the events literature over recent decades. The aims of this paper are to re-conceptualise major international cultural exhibitions as special events, present a framework of the experiences these exhibitions generate for visitors, and explore the roles such experiences play in visitor well-being. The study draws on the findings of qualitative research conducted in Australia and New Zealand. Semi-structured interviews were conducted with representatives of art galleries and museums in Melbourne, Canberra, Auckland, and Wellington involved in hosting ‘blockbuster’ exhibitions, as well as representatives of regional cultural, tourism, and events organisations. This paper presents a ‘3Es’ experience realms framework, which comprises the key experiences that a major cultural and arts event generates for visitors: entertainment, enrichment, and emotional engagement. The first realm of the 3Es framework, entertainment, has encountered scepticism in the museum field; however, research findings here corroborate the arguments of those scholars who hold that entertainment may help to engage visitors and facilitate education. Enrichment comprises the creation of a favourable environment for new knowledge to be processed, and the enhancement of knowledge. The third realm is an emotionally engaging experience that results from social interactions, activities, and contemplation of and learning about unique exhibits. The framework demonstrates an interplay of these three major experiential dimensions and visitors’ hedonic and eudaemonic well-being. Exhibition and event organisers can utilise this framework to plan the delivery of memorable experiences for visitors and explore the ways in which their event can be made enjoyable, enriching, and emotionally engaging.

scholarly journals Women’s lives in times of Zika: mosquito-controlled lives?

2018 ◽  
Vol 34 (5) ◽  
Author(s):  
Ana Rosa Linde ◽  
Carlos Eduardo Siqueira
Keyword(s):  
Coping Strategies ◽  
Sampling Technique ◽  
Well Being ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
International Agencies ◽  
The Us ◽  
Women's Lives ◽  
Heavy Burden ◽  
The Impact

Zika virus infection during pregnancy is a cause of congenital brain abnormalities. Its consequences to pregnancies has made governments, national and international agencies issue advices and recommendations to women. There is a clear need to investigate how the Zika outbreak affects the decisions that women take concerning their lives and the life of their families, as well as how women are psychologically and emotionally dealing with the outbreak. We conducted a qualitative study to address the impact of the Zika epidemic on the family life of women living in Brazil, Puerto Rico, and the US, who were affected by it to shed light on the social repercussions of Zika. Women were recruited through the snowball sampling technique and data was collected through semi-structured interviews. We describe the effects in mental health and the coping strategies that women use to deal with the Zika epidemic. Zika is taking a heavy toll on women’s emotional well-being. They are coping with feelings of fear, helplessness, and uncertainty by taking drastic precautions to avoid infection that affect all areas of their lives. Coping strategies pose obstacles in professional life, lead to social isolation, including from family and partner, and threaten the emotional and physical well-being of women. Our findings suggest that the impacts of the Zika epidemic on women may be universal and global. Zika infection is a silent and heavy burden on women’s shoulders.

scholarly journals ‘It’s a real fine balancing act’: directly employed care workers’ experiences of engaging with health services

2021 ◽  
Author(s):  
Jane Wilcock ◽  
Jill Manthorpe ◽  
Jo Moriarty ◽  
Steve Iliffe
Keyword(s):  
Health Services ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Well Being ◽  
Care Work ◽  
Structured Interviews ◽  
Care Workers ◽  
The Impact ◽  
Health And Well Being

Little is known of the experiences of directly employed care workers communicating with healthcare providers about the situations of their employers. We report findings from 30 in-depth semi-structured interviews with directly employed care workers in England undertaken in 2018–19. Findings relate to role content, communication with healthcare professionals and their own well-being. Directly employed care workers need to be flexible about the tasks they perform and the changing needs of those whom they support. Having to take on health liaison roles can be problematic, and the impact of care work on directly employed workers’ own health and well-being needs further investigation.

scholarly journals Efficacy of a brief online mindfulness-based intervention on the psychological well-being of health care professionals and trainees during the COVID-19 pandemic: A mixed method design

2021 ◽  
Vol 26 ◽  
Author(s):  
Iram Osman ◽  
Shaista Hamid ◽  
Veena S. Singaram
Keyword(s):  
South Africa ◽  
Health Care ◽  
Mixed Method ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Well Being ◽  
Personal Accomplishment ◽  
Intervention Analysis ◽  
Health Crisis ◽  
The Impact

Background: During the coronavirus disease 2019 (COVID-19) pandemic, health professionals were pushed to the front line of a global health crisis unprepared and resource constrained, which affected their mental well-being.Aim: This study aimed to investigate the effectiveness of a brief online mindfulness-based intervention (MBI) on stress and burnout for health professionals training and working in South Africa during the COVID-19 crisis.Setting: The context of the study is the overburdened, under-resourced health care system in South Africa during a global pandemic.Methods: A mixed method framework was adopted for this study. The quantitative data was analysed using descriptive analysis and the participants’ qualitative experiences were interpreted using interpretative phenomenological analysis.Results: Forty-seven participants took part in this study. The study found a statistically significant (p 0.05) reduction in stress levels and emotional exhaustion as well as an increase in mindful awareness and feelings of personal accomplishment after the intervention. The participants’ shared experiences were analysed in two parts. The pre-intervention analysis presented with central themes of loss of control and a sense of powerlessness because of COVID-19. The post-intervention analysis comprised themes of a sense of acquired control and empowerment through increased mindfulness.Conclusions: The study found that a brief online MBI can be associated with reduced levels of stress and burnout as well as an increased sense of control and empowerment, felt both personally and professionally, during a global crisis.Contribution: The impact of an online MBI for health care professionals amidst a pandemic has not been previously documented.

Sign in / Sign up

Export Citation Format

Share Document