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.

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 The impact of sleep disturbances on care home residents with dementia: the SIESTA qualitative study

2020 ◽  
Vol 32 (7) ◽  
pp. 839-847
Author(s):  
Lucy Webster ◽  
Kingsley Powell ◽  
Sergi G. Costafreda ◽  
Gill Livingston
Keyword(s):  
Qualitative Study ◽  
Sleep Disturbance ◽  
Sleep Disturbances ◽  
Care Home ◽  
Well Being ◽  
Structured Interviews ◽  
Topic Guide ◽  
Disturbed Sleep ◽  
Risk Of Falls ◽  
The Impact

ABSTRACTObjectives:Nearly 40% of care home residents who are living with dementia also have symptoms of disturbed sleep. However, the impact of these disturbances is relatively unknown and is needed to indicate whether interventions are warranted; therefore, we aimed to investigate the impact.Design:One-to-one semi-structured interviews.Settings:Four UK care homes.Participants:We interviewed 18 nurses and care assistants about residents with sleep disturbances.Measurements:We used a topic guide to explore staff experience of sleep disturbance in residents with dementia. The interviews were audio recorded and transcribed and then analyzed thematically by two researchers independently.Results:Staff described that sleep disturbances in most, but not all, residents impacted negatively on the resident, other residents, staff, and relatives. Residents became more irritable or agitated if they had slept badly. They slept in the daytime after a bad night, which then increased their chances of being awake the following night. For some, being sleepy in the day led to falls, missing medication, drinks, and meals. Staff perceived hypnotics as having low efficacy, but increasing the risk of falls and drowsiness. Other residents were disturbed by noise, and staff described stress when several residents had sleep disturbance. Some of the strategies reported by staff to deal with sleep disturbances such as feeding or providing caffeinated tea at night might be counterproductive.Conclusions:Sleep disturbances in care home residents living with dementia negatively affect their physical and psychological well-being. These disturbances also disturb other residents and increase stress in staff.

Improving infectious TB education for foreign-born patients and family members

2021 ◽  
pp. 001789692110615
Author(s):  
Nancy Bedingfield ◽  
Bonnie Lashewicz ◽  
Dina Fisher ◽  
Kathryn King-Shier
Keyword(s):  
Family Member ◽  
Health Care Providers ◽  
Family Members ◽  
Large City ◽  
Well Being ◽  
Care Providers ◽  
Foreign Born ◽  
Structured Interviews ◽  
Negative Impacts ◽  
Many Sources

Objective: In low tuberculosis (TB) incidence countries, linguistic and cultural dissonance between families experiencing infectious TB and TB health care providers is a barrier to effective communication and successful treatment. The purpose of this research was to explore infectious TB education and counselling from the perspective of patients and family members who are foreign-born. Design/Setting: One component of a multiphase, qualitative case study conducted in Calgary, a large city in western Canada. Method: Data were collected through semi-structured interviews, chart review and field notes and analysed thematically. Eight families were represented in the 6 patient and 13 family member participants who had recently experienced infectious TB. Results: Three themes were generated from the data: ‘learning about TB from many sources’, ‘reassurance and connection’ and ‘missing information’. Participants described learning about TB in different ways, feeling reassured once they knew more and sharing information with others. Overall, participants expressed satisfaction with education and counselling received. However, there were indications that communication problems had occurred. Participants asked questions during the interview, described areas of lingering confusion and shared TB-related behaviours incongruent with medical understanding. Knowledge gaps often increased isolation. Conclusion: Gaps in infectious TB education and counselling have negative impacts on patient and family member well-being. Education and counselling can be improved using multiple modes of communication, proactively addressing common misperceptions and reducing barriers to patient participation. Improvements could empower families to better manage their own experience and share accurate TB information with their communities.

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.

scholarly journals ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood

Autism ◽  
2019 ◽  
Vol 24 (1) ◽  
pp. 135-146 ◽  
Author(s):  
Alexandra Leedham ◽  
Andrew R Thompson ◽  
Richard Smith ◽  
Megan Freeth
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Well Being ◽  
Autism Spectrum ◽  
The Self ◽  
Autism Spectrum Condition ◽  
Structured Interviews ◽  
Late Adulthood ◽  
Spectrum Condition ◽  
Fitting In ◽  
The Impact

Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage.

Evaluation of the Cradle to Kinder programme for Aboriginal mothers and their children: perspectives from the women and their workers

2020 ◽  
Vol 45 (4) ◽  
pp. 305-311
Author(s):  
Renée O’Donnell ◽  
Muriel Bamblett ◽  
Gabrielle Johnson ◽  
Sue-Anne Hunter ◽  
Kerry Stringer ◽  
...  
Keyword(s):  
Child Protection ◽  
Interpretative Phenomenological Analysis ◽  
Home Visiting ◽  
Well Being ◽  
Parenting Skills ◽  
Structured Interviews ◽  
Aboriginal Community ◽  
Connection System ◽  
Generous Contribution ◽  
The Impact

AbstractThis research was undertaken on the lands of the Wurundjeri people of the Kulin nation. We pay our respects to Elders of the past, present and emerging, and also acknowledge the generous contribution to this research made by women and their families and Victorian Aboriginal Child Care Agency (VACCA) staff. Aboriginal Cradle to Kinder (AC2K) is a home-visiting and advocacy programme focussed on promoting Aboriginal maternal and child health during both pre- and postnatal stages of parenthood which was delivered by VACCA, an Aboriginal Community Controlled Organisation. While there have been some feasibility assessments conducted on AC2K, no study to date has evaluated the impact of this programme from the perspective of neither the women nor the staff who deliver the programme. The aim of this study, therefore, was to evaluate how both the women and the staff evaluated the AC2K programme, namely the strengths, limitations and recommendations of the programme. Through consultation with VACCA, this study used a qualitative approach using interpretative phenomenological analysis to explore the processes underpinning the programme coupled with participants’ experiences of the programme. A co-design process was used in the development of interview questions, and a total of seven women and six workers participated in semi-structured interviews. The results revealed three superordinate themes across both participant groups: cultural connection (i.e. how well the programme facilitates cultural connection), system complexities (i.e. caseloads, staff turnover and child protection [CP] difficulties) and programme features (i.e. parenting enhancement and unique programme benefits). The processes, and the programme more broadly, were evaluated positively by both the women and staff who supported its delivery. Specifically, a greater connection to culture, increased parenting skills and unique programme benefits were reported. However, there were recommendations on how the programme could be further strengthened, including negotiable caseloads with the Department and improved partnership with CP. These changes can help to further improve the experiences of both the women and their workers when engaging in Aboriginal specific maternal health and well-being supports.

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.

Phenomenological study about enhancing university student's psychosocial wellbeing through YouTube videos

2021 ◽  
Author(s):  
Ko Wai Chan
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Phenomenological Study ◽  
Research Question ◽  
Differential Susceptibility ◽  
Well Being ◽  
Treatment Programs ◽  
Altruistic Behavior ◽  
Structured Interviews ◽  
Self Confidence ◽  
Psychosocial Wellbeing

The present qualitative study aimed to explore how the attitudes, experiences, and feelings of Autonomous Sensory Meridian Response (ASMR) videos could be used to enhance psychosocial wellbeing similar to mindfulness-based treatment programs. ASMR is an atypical and multisensory phenomenon in which a tingling sensation is often elicited following specific audio-visual stimulations. Although ASMR experiences have been announced to enhance wellbeing and phenomenologically superimposed with mindfulness, there is a lack of research exploring how ASMR experiences relate to wellbeing. In this study, the theoretical underpinnings of the Differential Susceptibility to Media Effects Model (DSMM) by Patti M. Valkenburg and Jochen Peter (2013) are merged with Positive psychology's wellbeing theory (PERMA) by Seligman (2011) for the first time with the objective to explore and link the distinguishing characteristics of ASMR video with wellbeing outcomes.The study entailed two in-depth semi-structured interviews, which were conducted with three university students (one female and two males) in Finland. Interpretative phenomenological analysis with coding schemes was employed and guided by DSMM and Seligman's five domains of well-being. Three main themes and fourteen subthemes emerged from the analyses of the interview transcripts corresponding to the research question. The main themes include ASMR intentional use, ASMR media contents, and ASMR multisensory integration. The subthemes encompass prior ASMR-like experiences, social pressure from family members and curiosity, different types of sound, voices, and movement; nostalgic thoughts, pro-change bias, and positive responses. Exploration of interviewees' narratives further brought to light issues concerning ASMR's emotional effects on wellbeing. Analyses reveal different subthemes clustered into five main themes: Positive Emotion, Engagement, Relationships (Connectedness), Meaning and Making a Connection, and Accomplishment.The findings showed how ASMR videos enhance wellbeing through mindfulness-like experiences. These research findings are significant due to the ASMR videos' potential to increase wellbeing and happiness. Furthermore, their influence can extend to elevating the ability to concentrate on tasks at hand, improving the quality of sleep by stopping rumination, increasing self-confidence, and motivating altruistic behavior. The beneficial potential of ASMR videos to promote psychosocial wellbeing is remarkable

scholarly journals The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain

2018 ◽  
Vol 6 (3) ◽  
pp. 57
Author(s):  
Fatima Saleh ◽  
Catherine S. O’Neill
Keyword(s):  
Home Care ◽  
Lived Experience ◽  
Family Caregivers ◽  
Nursing Care ◽  
Phenomenological Study ◽  
Family Members ◽  
Terminally Ill ◽  
Well Being ◽  
Care Clinic ◽  
Hermeneutic Phenomenological

Objective: The aim of the study was to explore the lived experience of caregivers providing home care for terminally ill family members, with the objectives of describing their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain.Methods: The study adopted a Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was generated through one to one, in-depth interviews and analyzed using Interpretative Phenomenological Analysis.Results: Three main themes emerged from the data: (1) the burden of care, (2) comforts, and (3) coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens, combined with a lack of professional support. The collective experience was infused with intense emotions because of a lack of structured support, resulting in negative emotions that frequently affected the caregivers’ well-being and their ability to care for the ill person. Nevertheless, caregivers tried to maintain care and comforts for their terminally ill relative in the home. They adopted the home environment, arranged resources to ease caring and provided psychological care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members.Conclusions: Caregivers were not prepared for the commitment and burdens of home care when a family member is terminally ill. A recommendation from the study findings is that training be offered on nursing care before patients discharge. In addition, a reactivation of the palliative care clinic hotline service would support family caregivers. A further recommendation is that home nursing care and hospice services be established to improve homecare services for family caregivers in Bahrain.

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.

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