Reconceptualising patient-centred care: the role of family carers

A. Hogden, D. Greenfield, P. Nugus, M. Kiernan

Research output: Contribution to conferencePaperpeer-review


Objectives: Patient-centred care involves the formation of partnerships between patients, families and health professionals as a responsive approach to the needs of patients. The roles carers take in these partnerships are not well understood. This study investigated the extent of carer participation in decision-making for Amyotrophic Lateral Sclerosis (ALS), to determine carer roles in facilitating patient-centred care.

Methods: An exploratory, in-depth study was conducted with eight carers of ALS patients. Carers participated in semi-structured interviews. Topics included: carer experience with ALS; carer participation in decision-making; and influences on patients’ decision-making. Interviews were recorded and transcribed, and coded and analysed for emergent themes.

Results: ALS carers formed decision-making triads with patients and health professionals for patients’ symptom management and quality of life. Carers facilitated patient-centred care through their participation in decision-making. Four carer roles were identified: promoting the patient voice by endorsement and advocacy; promoting patient health literacy by sourcing, synthesising and filtering information; providing emotional support; and providing logistical assistance. Carer roles were shaped by the dynamic disease trajectory of ALS, and by the patient-carer relationship. Various barriers existed to carer participation in these role, including: tension between patient choices and their best interest; communication difficulties with service providers; carer coping strategies; lack of carer support; and the high burden of care. Moreover, perspectives on planning for the future differed between spouse carers, and carers who were adult children of the patient. Spouse carers preferred to avoid thoughts of the future, responding to changes in the patients’ condition as they arose. Carers of parents were proactive planners, and sought to anticipate patients’ future care needs.

Conclusion: Carers roles in patient-centred care are multifaceted, and extend beyond the previously recognised roles of physical, emotional and logistical support. In particular, carers promote patient autonomy through their advocacy for patients’ choices, and information synthesis and filtering in promoting patients’ health literacy. Patient-centred care is facilitated by decision-making partnerships between patients, carers and health professionals. However, challenges to carer participation are complex. Other than communication difficulties between patients, carers and health professionals, the majority of
barriers are dictated by the individual circumstances of the disease and the patient-carer relationship. Barriers frequently impede carer participation, beyond addressing patients’ basic care needs. Further difficulties arise from health professional practice and policy. Issues of patient confidentiality and duty of
care hinder health professionals’ capacity to work collaboratively with carers to fully achieve patient-centred care.
The implications of this study are that health professionals may need to reconceptualise ‘patient’ as ‘patient and carer’. Engagement with carers allows health professionals to fully realise the caregiving role, and further tap in to the resources that carers offer. This may require rethinking current practice and policy that restricts carer participation through confidentiality and duty of care considerations
Original languageEnglish
Number of pages1
Publication statusPublished - 2015
Event32nd International Safety and Quality Conference: : Building quality and safety into the healthcare system - Doha, Qatar
Duration: 4 Oct 20157 Oct 2015


Conference32nd International Safety and Quality Conference:
Abbreviated titleISQua 2015


  • Carer burden
  • health literacy


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