Patients’ experiences with rehabilitation care: a qualitative study to inform patient-centred outcomes

Abstract

Purpose

To explore patients’ experiences with rehabilitation, with a particular focus on outcomes that are perceived to be of value.

Materials and methods

Semi structured interviews were conducted with adults who recently had rehabilitation for a chronic health condition in a hospital or community setting. Banja’s definition of rehabilitation (personally fulfilling, socially meaningful and functionally effective) informed the enquiry and interpretation of the findings. Thematic analysis was used to categorise the data into codes and themes.

Results

16 people (40–84 years, 69% male, n = 11) participated in individual telephone-interviews, describing their perspectives on what mattered to them about rehabilitation. The themes generated from the data suggested that participants focused on important social, functional and personal outcomes, but also required two fundamental features in their rehabilitation, namely a personalised and relational experience and a clear understanding of their own progress delivered in a way that is meaningful to them.

Conclusions

People who undertake rehabilitation express diverse expectations when assessing their outcomes and progress, although common elements could be identified. Participants valued a number of key features about the delivery and evaluation of their rehabilitation. These features revolved around the personalisation of the process and having clarity about progress.

Implications for rehabilitation

• Rehabilitation therapists should encourage ongoing personalised discussions about progress to promote clear and shared understanding of what clients and therapists expect, alongside the use of current available measures.

• Rehabilitation therapists should consider providing opportunities for participants to self-reflect about their experiences and modify their goals based on personal progress and deeper understanding of their circumstances.

• Rehabilitation therapists should consider assessing the extent to which the individual feels satisfied with and capable of achieving these outcomes before departing from the rehabilitation service.

• Overall, rehabilitation teams should think about spending more time with the patient to prioritise and understand their individual goals and values.

Keywords:

• Patient-reported outcomes measures
• disability
• rehabilitation
• patient-reported experience measures
• chronic conditions

Acknowledgments

This study was supported by a Menzies Health Institute of Queensland Collaborative Interdisciplinary Grant. The authors would like to express their sincere gratitude to the participants who shared their experiences with rehabilitation. Many thanks to Amputees Family and Support Group Queensland; Lung foundation Australia; Stroke Foundation Consumer Council; Pain Australia; Brain Injury Australia; Metro North Hospital and Health service consumer engagement group; Queenslanders with Disability network; National Disability Services; Council of Ageing Queensland; Health consumer Queensland; The Hopkins Centre, for advertising this study. The authors would also like to thank Griffith University Marketing and Communication team for advertising the study. They would also like to thank project officer, Kylie Rixon, who was involved in the initial design and ethics of the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The present research was financially supported by Menzies Health Institute Queesnland Collaborative Interdisciplinary Grants Scheme.