An Exploration of the Cardiac Rehabilitation Needs of Pakistani Heart Failure (HF) Patients and their Family Caregivers – A Qualitative Study

Sharif, Rifat (2020) An Exploration of the Cardiac Rehabilitation Needs of Pakistani Heart Failure (HF) Patients and their Family Caregivers – A Qualitative Study. Doctoral thesis, Birmingham City University.

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Abstract

INTRODUCTION/BACKGROUND

Chronic heart failure is a complex condition characterised by loss and disabling symptoms, which sufferers and health care professionals have struggled to understand and manage. Previous and current studies have focused on several cultures as opposed to the proposed study in which Pakistanis of mixed gender were invited to participate. In Western society, there has been an emergence of active and informed patients, with contemporary patients increasingly involved in decisions about their treatment and care. It has been acknowledged that the vast majority of chronic disease management is through self-care and effective self management. This is also known to reduce resource demand. However, there has been comparatively little research on the concept of the expert self-managing patient within the Pakistani heart failure population. Little was known of the impact and subjective experience of heart failure within Pakistani communities and the issues of caring for patients.

This study was undertaken in response to concerns establishing deficiencies in knowledge of cardiac rehabilitation amongst Pakistani heart failure patients and their family caregivers. No previous investigation had explored this in detail. As part of the present study, it was important to understand and consider the cultural perspective of Pakistani groups, in both a sensitive and appropriate manner, in order to address the needs of this specific Pakistani population in an advanced Western country, where both mortality and morbidity were rising, and ethnic populations were being failed.

AIM OF THE STUDY

The aim of the current study was to explore patient experiences following diagnosis of heart failure in order to identify barriers and facilitators of management, and access to cardiac rehabilitation services. Moreover, it was anticipated that in collaboration with heart failure patients, family caregivers, and healthcare professionals, the development and recommendations of a culturally sensitive tool for Pakistani patients and their family caregivers living with heart failure would be proposed. 5

OBJECTIVES OF THE STUDY

The objectives of the study were to elicit cultural definitions of heart failure and the impact this had on accessing services for both patients and their family caregivers.

METHODS

Following ethical approval, this qualitative study utilised Strauss and Corbin’s (1998) approach to Grounded Theory. A two-phase continuum 12 weeks apart described the experiences of one-to-one interviews, which were conducted with a purposive sample of 18 heart failure patients post discharge following diagnosis of heart failure. Furthermore, nine family caregiver interviews were held (post-interview with patients) in addition to a focus group discussion with a multi-disciplinary team of healthcare professionals. Data collection and analysis were iterative and followed theoretical sampling principles.

FINDINGS

‘Battling the culture and ethnic sensitive obstacles of cardiac rehabilitation’ was the generated emerging theory of the present study. Emerging from the current study was a substantive theory in which the absence of accessing culturally appropriate and ethnic sensitive tailored cardiac rehabilitation was identified as the main obstacle facing Pakistani heart failure patients and their family caregivers. These struggles acted as the basic social processes of how Pakistani heart failure patients and their family caregivers self-managed. Core categories to emerge from data amplified struggle, limited understanding and uncertainty. Struggle pertained to language barriers and poor access to service provision. Limited understanding was exacerbated by intervening variables, including lack of contact with health professionals and a poor satisfaction of provision to medical care. Uncertainty arose within self-care and poor understanding of knowledge enabling sophisticated management. The properties, conditions, and consequences of struggle, limited understanding and uncertainty were explicated in the development of a theory, supportive of care for Pakistani heart failure patients and their families. The developed theory uncovered in this study conceptualised the major categories to concepts in theory development as it underpinned and recognised the need for a negotiated pathway to self-management. Healthcare professionals together with Pakistani heart failure patients must negotiate the process of recovery by entwining culture, ethnicity and faith. Without the understanding of such imperative mechanisms in place, the functional rehabilitation and lifestyle development of health and recovery including organisational, infrastructural, situated and gendered experience factors weakened the journey of the 6 Pakistani heart failure patient and family caregiver. These findings had implications for health professionals’ practice and cardiac rehabilitation programme improvement and a policy priority for government.

DISCUSSION

A storyline was described that illustrated the journey of living with chronic heart failure exploring the barriers and enablers of effective cardiac rehabilitation. Recommendations for policy and practice were generated that included acknowledgement of the Pakistani heart failure patients’ and family caregivers’ needs beyond the medically idealised type. It was suggested that a move away from the rigid content and delivery style would promote a greater focus on the subjective experience of chronic illness with an emphasis on culturally sensitive and appropriate tailored delivery.

CONCLUSION

This study assisted the understanding of managing the needs of Pakistani chronic heart failure patients and their family caregivers. The present study has brought to the forefront unique religious, cultural and ethnic values upon which the Pakistani population commands a bespoke platform that requires improved efficacy of health promotion and a re-evaluation of the effectiveness of knowledge management interventions. In addition, it has enriched the understanding and communication of health care professionals; thereby, facilitating encounters characterised by greater support and empathy for individuals living with chronic heart failure in both the capacity of a patient and family caregiver.

Item Type: Thesis (Doctoral)
Date: 9 October 2020
Uncontrolled Keywords: Heart Failure, Qualitative, Family Caregivers
Subjects: B100 Anatomy, Physiology and Pathology
B900 Others in Subjects allied to Medicine
L900 Others in Social studies
Divisions: Faculty of Health, Education and Life Sciences > School of Health Sciences
REF UoA Output Collections > Doctoral Theses Collection
Depositing User: Kip Darling
Date Deposited: 31 Aug 2021 16:04
Last Modified: 31 Aug 2021 16:04
URI: http://www.open-access.bcu.ac.uk/id/eprint/12133

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