Living with peripheral vascular disease: patients and their carers

AIM: This study explores the life experiences of those with peripheral vascular disease (PVD) and their carers. SAMPLE: A sample of seven couples. METHOD: An ethnographic approach using taped interviews in participants' own homes. RESULTS: Acceptance and adaptation were the core concepts to emerge from the data. Pain was identified as being central to the experience of PVD, with impaired mobility, loss of independence, disease progress and professional support being closely interrelated. CONCLUSION: The themes highlighted the devastating nature of the experience of living with PVD. Those with PVD need to feel that the complexity of their experience is understood while carers need to feel their role is acknowledged. Health care professionals should develop their understanding of the experience of PVD for patients and their carers, and apply this knowledge to their practice.     

Living with dying: coping with HIV disease.

People diagnosed with HIV disease experience multiple and severe stressors; however, little is known about these stressors and coping among this population. This phenomenological study was undertaken to (1) gain an understanding of the informants' lived experiences of coping with HIV disease and (2) develop a disease-specific instrument to measure stress and coping. The study involved interviews with 36 people with HIV disease. The interviews were analyzed and synthesized to (1) derive the structure of the experience through phenomenological analysis and (2) identify stress and coping themes through content analysis. Only the findings from the phenomenological analysis are reported here. The structure of the lived experience of coping with HIV disease unfolds from the initial diagnosis of being HIV-seropositive through the diagnosis of AIDS to impending death. The processes involved in this structure were labeled Living with Dying, Fighting the Sickness, and Getting Worn Out.     

Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis

BACKGROUND: A study designed to explore the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their carers, particularly with regard to ongoing and palliative care needs. METHODS: The participants were nine men and one woman with severe COPD and the carers of eight of the men, in East Devon, UK. Semi-structured interviews were undertaken, transcribed and analysed using interpretative phenomenological analysis (IPA). RESULTS: The emergent themes were of losses, adaptation, relationships with health professionals and effect on carer. Losses reflected the loss of personal liberty and dignity and of previous expectations of the future. Adaptation included strategies to cope with the effects of the disease. Relationships related to both positive and negative aspects of contact with health professionals. There was appreciation for continuity of care and reassurance. The effect on the carer was evident particularly as they had to take on multiple roles. They also experienced some of the same losses as the patient and appeared enmeshed with the illness. CONCLUSIONS: This study confirmed the inexorable decline in activities of daily life and social isolation for patients with severe COPD. Adaptive strategies were common and some positive aspects were identified. Support from the primary health care team was appreciated. The strain on carers was very apparent. The concept of a more structured sharing of information and a surveillance role mediated by health care professionals known to the patient and carer would be a pragmatic approach to improving care.     

Working in partnership with adult informal carers: policy and practice

In England and Wales alone, more than 5 million informal carers provide support to individuals who wish to remain within their own homes. However, research has identified that there is a limited understanding of the informal carer role among health professionals, and deficits in information sharing and the involvement of informal carers in decision making in relation to care packages. This article considers recent policy relating to this area, placing particular emphasis on the role of the district nurse in working in partnership with informal carers.     

Evaluating the needs of informal carers

Abstract

Sore mouth is a common symptom in cancer patients which impacts negatively on their quality of life. This audit was performed on consecutive admissions to an in-patient palliative care unit in Perth, Western Australia to assess the incidence of mouth soreness and the associated microbiological culture and polymerase chain reaction (PCR) results. Of patients, 24% (20/83) recorded a sore mouth. The most common organism isolated was Candida spp. (n = 8), followed by herpes simplex virus type I (HSV; n = 5), Staphylococcus aureus (n = 2) and Klebsiella pneumoniae (n = 1). Only one of the five patients with HSV had the classic 'cold sore' lesion with crusting and ulceration on the lip. The others had non-specific findings such as erythema (n = 3), coated tongue (n = 2) or dry mouth (n = 3). The results highlight a greater incidence of HSV than previously reported and suggest further work to be performed on the aetiology and treatment of sore mouth in hospice patients.     

Falling in Parkinson's disease: the impact on informal caregivers

Purpose: The aim of this study was to explore the views and experiences of the informal caregivers of repeat fallers with Parkinson's disease. Method: Individuals were invited to participate in this study if they were the informal caregiver of a person with Parkinson's disease (PD) who had experienced more than one fall in the previous 12 months. Participants were interviewed about their experience of managing falls using a semi-structured interview schedule. Interview data were transcribed and analysed using thematic analysis. Results: Fourteen caregivers (11 female) participated in the study. All were marital partners of a repeat faller with Parkinson's disease. The average age of the participants was 69.9 years (44 - 79). Their partners had had PD for an average of 16.7 years. Six major themes emerged from the analysis of the interview data, four directly related to falls management (the falls; consequences of the falls for the person with PD; caregivers' experiences of falls; consequences of falls for the caregiver). The majority of caregivers were frightened about their spouse falling. They used a number of methods of getting their spouse up from the floor but often injured themselves as a consequence. Caregivers highlighted the high level of care they provided and the social and psychological impact of the condition on them. They received limited help in looking after their spouse and little information about falls or about the disease in general. Conclusion: Caregivers in this study felt unprepared for their role and expressed a need for more support and advice, especially about managing falls.     

Falling in Parkinson's disease: the impact on informal caregivers

Purpose: The aim of this study was to explore the views and experiences of the informal caregivers of repeat fallers with Parkinson's disease. Method: Individuals were invited to participate in this study if they were the informal caregiver of a person with Parkinson's disease (PD) who had experienced more than one fall in the previous 12 months. Participants were interviewed about their experience of managing falls using a semi-structured interview schedule. Interview data were transcribed and analysed using thematic analysis. Results: Fourteen caregivers (11 female) participated in the study. All were marital partners of a repeat faller with Parkinson's disease. The average age of the participants was 69.9 years (44?-?79). Their partners had had PD for an average of 16.7 years. Six major themes emerged from the analysis of the interview data, four directly related to falls management (the falls; consequences of the falls for the person with PD; caregivers' experiences of falls; consequences of falls for the caregiver). The majority of caregivers were frightened about their spouse falling. They used a number of methods of getting their spouse up from the floor but often injured themselves as a consequence. Caregivers highlighted the high level of care they provided and the social and psychological impact of the condition on them. They received limited help in looking after their spouse and little information about falls or about the disease in general. Conclusion: Caregivers in this study felt unprepared for their role and expressed a need for more support and advice, especially about managing falls.     

Partnership nursing: influences on involvement of informal carers

Factors influencing family involvement in the care of children in hospital were explored in a survey of 243 inpatients in two hospitals Eighty-five per cent of the children were receiving some or all of their care from a family member, usually the mother Significant influences on the amount and type of involvement included acuity, type of illness, length of stay and the language spoken by the family Other social factors, such as distance from the hospital, number of dependent siblings, social class and ethnicity were not significant influencing factors in this population The influence of language on involvement, and conclusions from related literature, suggest that characteristics of the interaction such as communication and nursing style are more significant than social structural factors A typology of nursing approaches to informal carers is proposed which could apply beyond the paediatric context Further work is needed to test the hypothesis that such approaches are characterized by nurses excluding the carer, or permitting, making assumptions about, or negotiating carer involvement     

Psychosocial interventions for non-professional carers of people with Parkinson's disease: a systematic scoping review

Title. Psychosocial interventions for non‐professional carers of people with Parkinson’s disease: a systematic scoping review. Aim. This paper is a report of a scoping review to systematically identify and collate the evidence on psychosocial interventions for non‐professional carers of people with Parkinson’s disease. Background. Carers are critical to people with Parkinson’s disease maintaining independent living and quality of life. Parkinson’s disease imposes a challenging constellation of symptoms and no summary of effective interventions for carers and their unique support needs exists. Data sources. Thirty electronic databases were searched from their inception to July 2006, and bibliographies and specific internet sites were scanned. Methods. Eligible studies were categorized according to design, type of economic evaluation where applicable, number of participants, country of evaluation, intervention, orientation, provider, setting, method of delivery, carer population, patient population, carer outcomes, patient outcomes and authors’ conclusions. Data were extracted by one reviewer and checked by another reviewer; discrepancies were resolved through discussion or arbitration by a third reviewer. Findings. Thirty studies met the inclusion criteria. Most investigated relatively unique interventions involving multiple elements; the majority were not aimed primarily at carers but were embedded in patient treatment programmes. Many were pilot studies, employing weak research designs and involving very small numbers of participants and most were not designed to assess the clinical or cost effectiveness of the intervention for the carers. Conclusion. Several interventions merit further investigation but there is currently little evidence to show which approaches are effective and cost effective in supporting carers. Future studies need to employ appropriate and rigorous research designs with adequate samples and outcome measures, and with more focus on the carer.     

The pressures felt by informal carers of people with dementia

Caring for people with dementia is complex and demanding, and informal carers carry out much of the care. In this article, Madeline Armstrong outlines the different types of dementia and discusses the psychological approaches to care. Informal carers experience many stressors when caring for people with dementia and Admiral nurses play an important role in supporting carers.     

Living with diabetes: perceptions of well-being

A group of 192 adult insulin-dependent diabetic patients free from manifest late complications were asked, through mailed questionnaires, about the influence of the disease on their daily life and about their feelings of well-being. Well-being was measured using 11 semantic differentials comprised of bi-polar adjectives. Only a minority of patients reported that the disease caused them considerable problems in daily life. The greatest problems occurred in connection with regularity in daily life (26% of subjects) and diet management (24%). Although a large proportion of the patients were very concerned about retinopathy (45%), other complications were of great concern for only 10 to 25%. Younger age was significantly associated with more problems in daily life and more worries about complications. There also were associations between younger age and feelings of anxiety, lack of freedom, insecurity, and reduced self-esteem. Most of the patients, both men and women, had a general feeling of well-being. Living with insulin-dependent diabetes appears to be quite consistent with experiencing well-being and feeling fit provided that no severe complications have developed.     

Parkinson's disease symptoms —'patients' perceptions

Self-assessment is significant for the accurate evaluation of patient's needs. This study examined the frequency and severity of symptoms suggested by the literature and by specialists as bothering Parkinson's patients. Four categories of symptoms were examined: (a) motor disability or activity loss, (b) mental change, (c) psychosocial difficulties, and (d) nonspecific symptoms. The findings show that there was correspondence between expert judgements and subject's reports regarding symptoms such as dyskinesia/tremor as well as walking, freezing gait, and changing position. Symptoms such as dressing self, getting in/out of bed, morning stiffness and deficit in cognitive sequencing, which experts described as characteristic of Parkinson's disease patients, bothered subjects less. In general, patient's mental and psychosocial symptoms were higher in their frequencies and perceived severity than problems of performing activities of daily living.     

Surviving severe COVID-19: Interviews with patients,informal carers and health professionals

Background

The COVID-19 pandemic has been associated with an unprecedented number of critical care survivors. Their experiences through illness and recovery are likely to be complex, but little is known about how best to support them.

Aim

This study aimed to explore experiences of illness and recovery from the perspective of survivors, their relatives and professionals involved in their care.

Study design

In-depth qualitative interviews were conducted with three stakeholder groups during the first wave of the pandemic. A total of 23 participants (12 professionals, 6 survivors and 5 relatives) were recruited from 5 acute hospitals in England and interviewed by telephone or video call. Data analysis followed the principles of Reflexive Thematic Analysis.

Findings

Three themes were generated from their interview data: (1) Deteriorating fast—a downhill journey from symptom onset to critical care; (2) Facing a new virus in a hospital—a remote place; and (3) Returning home as a survivor, maintaining normality and recovering slowly.

Conclusions

Our findings highlight challenges in accessing care and communication between patients, hospital staff and relatives. Following hospital discharge, patients adopted a reframed ‘survivor identity’ to cope with their experience of illness and slow recovery process. The concept of survivorship in this patient group may be beneficial to promote and explore further.

Relevance to clinical practice

All efforts should be made to continue to improve communication between patients, relatives and health professionals during critical care admissions, particularly while hospital visits are restricted. Adapting to life after critical illness may be more challenging while health services are restricted by the impacts of the pandemic. It may be beneficial to promote the concept of survivorship, following admission to critical care due to severe COVID-19.