Table 1: Summary of included studies (n=39) First author Date Method Analysis Sample Objective Main findings Search Bradley, S29 2013 Ethnographic interviewing Taxonomic 9 self-selected patients To empirically study the process and outcomes of the implementation of nurse-to-nurse bedside handover Patients preferred bedside handovers rather than traditional closed-door office handovers Bedside handovers incorporate social aspects for the patient and they subsequently feel more involved in their care Database Brough, C30 2006 Focus group and individual interviews Thematic 86 people from 4 non-English backgrounds recruited through formal and informal networks within each community To determine consumer experiences on the effectiveness of language service provision, specifically interpreters, in health settings Patients were often forced to communicate via family members or to get by without assistance The current level and standard of language service provision appeared to compromise the effectiveness and quality of the care received 'Inappropriate' use of interpreters of the opposite gender and the need for more access to interpreters Grey De, S31 2014 Semi structured face-to-face interviews Thematic 36 parents of 27 children < 3 months old To describe the perspectives of parents of young infants Parents of febrile infants expected reassurance and support from hospital but experienced a sense of Database
presenting to hospital with fever relinquished control, inadequacy and guilt De G32 1996 Semi-structured survey Thematic 148 completed surveys of surgery patients To determine if clinical outcomes are influenced by the specific information needs and expectations of surgery patients Information delivery was a principal factor influencing clinical outcomes and patient satisfaction Accurate and timely information provision is crucial during the pre- and post- operative periods Database Edwards, K19 2014 Semi-structured interviews Thematic 1 patient, 1 family member, 8 health staff To explore the perceptions of one patient’s hospital experience, identifying what mattered to the patient and family, and whether the healthcare providers were of what mattered Medication management, physical comfort and emotional security mattered most to patients Healthcare providers were not always aware of what mattered to the patient and family during their hospital admission Database Ford, K33 2011 Several data collection techniques including interviews, drawings and stories Constructivist grounded theory 10 children between the ages of 6 and 12 To study views and experiences of admission to hospital for surgery among children Therapeutic interventions such as humour, fun and play created an enjoyable care experience, and alleviated anxiety and fear often experienced by children admitted for surgery Database
Garrett, P34 2008 Language-specific focus groups Grounded theory 49 patients and 10 carers from speaking backgrounds To better understand the experience and to identify critical factors leading to their constructions of care for non-English speaking patients Recognition of patients’ powerlessness, rights, familial roles, language ability, religious and spiritual beliefs, socioeconomic status, and gender, contributed to experiences of care and the construction of illness among non-English speaking patients Database Henderson, A35 2009 Observation of patient–staff interactions; patient interviews Thematic 15 men and 24 women with a broad range of medical and surgical conditions To identify potential threats to patient dignity and ascertain patients’ perceptions about, if and how, dignity was maintained Patients’ dignity and privacy were maintained during care provision Patients may be accepting of considerable deviations in care provision if they perceive the organisation is working in their best interests Database Henderson, A36 2004 Semi-structured, face-to-face, and telephone interviews Thematic 20 elective surgery, 14 males and 6 females, patients To explore what hospitalised patients considered important for patient satisfaction to exist Several factors were identified as important to patients to make their hospital stay satisfactory, demonstrated via 16 themes The themes of ‘medical outcomes’, ‘clinical outcomes’, and ‘professionalism and competency of staff’ were the most consistently identified Database English
Iedema, R37 2008a Semi-structured interviews Discourse analysis identifying overarching themes 23 patients involved in adverse events and incident disclosure To explore patients’ and family members’ perceptions of Open Disclosure of adverse events that occurred during health care Health service incident disclosure rarely met and expectations A combination of formal Open Disclosure, a full apology, an offer of tangible support and evidence of practice improvement has a higher chance of gaining consumer satisfaction than if one or more of these components is absent Database Iedema, R38 2008b Semi-structured interviews Discourse analysis identifying overarching themes 131 self-selected clinical and 23 patients and family members To determine which aspects of Open Disclosure ‘work’ for patients and healthcare staff based on an evaluation of the National Open Disclosure Pilot Patients and staff overwhelmingly supported the use of an Open Disclosure process as an information sharing strategy after an adverse event The process was considered useful as a way to be briefed about the incident and its management in an ongoing process Healthcare professionals must consider the patient or family perception of the severity of an event and not just the health system definition Database
Markovic, M44 2004 Observations and semi-structured interviews Thematic 10 women from different backgrounds who had undergone a range of different surgical procedures To explore anxiety in the context of day surgery and identify the issues pertinent to the experiences of day surgery patients Day surgery-related anxiety was exacerbated by having to walk to the theatre and separated from their carer Database Marshall, A45 2004 Semi-structured interviews Thematic, phenomenological 10 patients (8 women and 2 men) aged 18 and over and expected to be discharged within the next 2 days To explore patients’ understanding and conceptualisation of patient-centred care Patients equated the type and quality of care they received with the staff that provided it; themes of connectedness, involvement and attentiveness were prevalent in their descriptions of what they wanted from their care Subthemes identified were: (1) resources (including workload and the physical environment); (2) culture; and (3) waiting Database Montgomery, K46 2012 Semi-structured interviews Interpretative phenomenological 10 patients undergoing aggressive inpatient cancer therapy (undergoing autologous transplantation) and their caregivers To gain deeper insights into patients’ experiences during aggressive cancer therapy and to suggest how these insights can be applied to models of patient-centred care Patients understood that they could neither battle the cancer nor undertake the therapy on their own Patients were frustrated by the limited opportunities to engage in their care Database
O'Callaghan, A47 2011 Semi-structured survey Thematic 202 patients, of working age, admitted for care following a moderate to severe traumatic brain injury (TBI) To investigate the continuum of care experienced by adults and their significant others following a moderate to severe TBI Very few participants report receiving services in line with recommendations made in clinical care guidelines Access to services varied according to individual’s healthcare funding and a lack of services were available on discharge Database Olver, I48 2010 Unstructured journal writing Thematic 38 patients (22 16 men) To obtain patients' experiences of the cancer treatment pathway to enable healthcare professionals to be educated on how to improve patient care Patients experienced a wide of emotional reactions to their care and felt more positive when given opportunities to be involved The treatment environment, including personnel was considered important to the care experience Database Peiris, W49 2012 Semi-structured interviews Thematic 19 adults undergoing inpatient rehabilitation for neurological and musculoskeletal impairments How do patients receiving inpatient rehabilitation experience physiotherapy and does their experience differ if they receive extra Saturday physiotherapy Patients valued interacting with physiotherapists and patients The patient-therapist interaction was more important to the patient than the amount or content of their physiotherapy Database
Penney, W50 2007 Participant observation and semi-structured interviews Thematic 36 patients aged 70 and over and 31 nurses caring for them To explore the participation of older people in their care in acute hospital settings and to explore their views of participation Older people equated participation in their own care with being independent The difficulties in communicating with health professionals and an inability to their own medications in inpatient settings were described as barriers to participation Database Piper, D51 2010 Patient and family interviews, surveys and observation Thematic 219 patients and 378 staff across 4 sites To engage patients, their families and staff in identifying the positive and negative aspects of their experience of two hospital departments Aspects of the experience were consistently identified as problematic: inadequate communication between staff, patients and carers, uncomfortable waiting facilities, lack of provision of information, lack of privacy and poor communication between departments Grey Piper, D52 2014 Semi-structured interviews Discourse analysis identifying overarching themes 13 participants from the ‘100 Patient Stories' study To analyse patients’ and their families’ experiences of Open Disclosure and offer recommendations to improve disclosure in rural areas Rural patients expected better preparation for disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was right for disclosure and more information about subsequent improvement processes Database
A formal open disclosure meeting following an adverse event was desired Patients reported the impact of social familiarity on the Open Disclosure process in rural areas J53 2005 Semi-structured interviews Thematic 14 parents of ill children To understand perceptions of parent participation in child’s care Good communication was identified as key to effective relationships between parents and Database Schembri, S54 2013 Written patient stories Thematic 300 self-selected patients To provide a perspective of healthcare experience through the patients’ eyes themes of positive experiences were: (1) attentive and considerate service; (2) effective treatment; and (3) timely service Three themes of negative experiences were: (1) ongoing problems; (2) service failure stories; and (3) slow and unresponsive service Grey Sharp, R55 2014 Semi-structured telephone interviews Thematic 10 patients selected while they waited for Peripherally Inserted Central Catheter (PICC) insertion To investigate the patient experience of PICC insertion, the significance of arm choice and the impact of the device on activities of living Those with no previous experience of a PICC described the information given by medical staff as minimal, technical and difficult to understand, leading to a poorer care experience Database
Stevens, J56 2001 Semi-structured interviews Thematic 16 women aged between 26 and 42 undergoing laparoscopic sterilisation To build theory about the day surgery experience by examining the perceptions of a group of women undergoing the same procedure: laparoscopic sterilisation Anxiety in the pre-operative period and lack of privacy in the pre- and post-operative periods were considerable concerns Pre-operatively this led to patients not discussing their concerns or condition with nursing staff Post-operatively this meant that patients were uncomfortable whilst they were experiencing pain, nausea and vomiting Database VIC Health57 2005 Focus groups Thematic 38 women and 5 men from the local community To gain an understanding of the cultural aspects of childbearing that are important to Bangladeshi women and their families Adaptations to make a more culturally appropriate care environment were considered important such as a space for daily prayers and space for family gatherings if required The lack of availability of translators was also noted Grey WA health58 2015 Semi-structured interviews and focus groups None 6 patients None provided Patients valued being treated as an individual in addition to good interpersonal skills and communication from staff Some experienced long waiting uncomfortable waiting areas, a lack of privacy and Grey
control and emotional comfort Zeitz, K65 2011 Focus groups Co-operative inquiry approach 5 workshops over 4 months with facilitators Thematic 4 volunteers 70 years or older who had either been patients at the hospital or cared for an older person, 4 clinicians, 3 facilitators To identify the care issues experienced by people in the acute setting that could be improved through a collaborative approach to action Aspects of a negative experience included unsuitable food, lack of involvement and chaotic discharge processes Participants identified the opportunity to work together with health providers as key to a positive experience Database J66 2013 Semi-structured interview Thematic 8 adolescent recovered-anorexic patients To establish how nurses ensure weight gain and a positive inpatient experience for the treatment of adolescents with anorexia nervosa by considering consumer perspectives Patients’ motivation to adhere to care was derived from strong relationships with nurses and they valued nurses who created a comfortable and productive environment Database
Table 2: Research traditions that have covered the Australian patient experience qualitatively Research tradition Academic discipline Definition and scope Conceptualisation of patient experience No. of studies Quality Improvement Multi-disciplinary: Nursing (13) Public health (2) Management (2) Medicine (1) The analysis of a system’s or organisation’s performance and identification of systematic strategies to improve it Satisfaction with clinical outcomes; a way of assessing feedback on expectations; consumer participation 18 Communication studies Interdisciplinary: Social sciences, nursing, and midwifery The study of communication, including interpersonal and mass media Patient engagement via ongoing, interactive communication between patients, carers and professionals before during and after a care experience 5 Paediatric health Multi-disciplinary: Nursing/midwifery (2) Public health (1) The of the medical care of infants, children and adolescents Carer participation; active involvement; satisfaction with medical 3
delivery for women processes and the environment Community health Health services research The study and of the health characteristics of biological communities, generally geographically based Consumer preferences and evaluations of care processes 1 Rehabilitation Allied health Studies that aim to enhance and restore functional ability and/or quality of life to those with physical impairments or disabilities Perceptions and attitudes the amount of care received 1 Indigenous health Nursing The of health and healthcare delivery for Indigenous consumers Identifying sociocultural needs, with a focus on communication 1 Adolescent health Nursing The study of health and healthcare delivery for Consumer contribution for therapeutic alliance 1
Discharge planning and processes Inadequacies in ‘Discharge planning and processes’ were identified in the negative experiences of patients in three studies.47,50,65 ‘Chaos and confusion’ in the discharge process was a common problem, with repetition, duplication and conflicting information often identified.65 Patients who were not consulted in the planning of their discharge said the process was poor. In one study, poor planning resulted in patients being re-admitted within 24 hours of their discharge and hospitalised for a further week.50 Patients described a lack of follow-up care after discharge and a general lack of support from health professionals beyond their immediate procedure.47 System- or service-related factors that contribute to positive or negative experiences. Patients’ experiences were predominantly influenced by the attitudes and behaviours of healthcare staff, which manifested as inviting opportunities for engagement, being respectful and being friendly. Nonetheless, six system- and service-related factors were identified as important and often lacking, contributing to negative experiences. These were: staff resources, equipment and transport resources, a process to ensure coordination of the care between services, interpreters/translation services, pre- and information and an adequate discharge process. The types of system and service factors that influenced positive and negative experiences are shown in . Table 4: System and service factors contributing to patients’ experiences System or service factor Examples of factors resulting in positive care experiences Examples of factors resulting in negative care experiences Staff resources Sufficient staff numbers Appropriate skill mix of staff Well-trained staff Qualified not available Staff are not trained in use of necessary equipment Inappropriate skill mix Lack of staff Equipment and transport resources Suitable equipment Working equipment Clean equipment Appropriate transport available to take patient to hospital Lack of equipment Lack of suitable transport Lack of available transport to hospital Coordination of care processes Policy to ensure that staff involved in a patient’s care communicate with each other Accurate documentation processes to maintain patient records that are accessible to all involved in their care Different methods for recording patient information Different storage locations for patient information in each specialty Translation services Available interpreter Interpreters in a range of languages Lack of interpreter Bilingual staff not required to use their other language