The person-centred care game: a reflective tool for learning person-centred care in higher education.

Person-centred care (PCC) is being implemented within many health care systems and educational institutions are important enablers of learning PCC. Teachers in higher education are responsible for helping students develop the ability to reflect. One approach is with serious games, which allow students to reflect on realistic situations and shape their skills with virtual patients. This paper describes the development of a serious game, the person-centred care game - (PCC game), which was designed to promote learning of PCC by reflection. We demonstrated how this PCC game could be used to induce PCC knowledge and skills by student reflection in an academic course on PCC.

Person-centred support programme (RESPECT intervention) for women with breast cancer treated with endocrine therapy: a feasibility study.

OBJECTIVE: The peRson-cEntred Support Programme EndoCrine Therapy intervention is a complex intervention encompassing a person-centred support programme for patients with breast cancer being treated with endocrine therapy (ET). The aim of this study was to explore the feasibility of the trial design and patient acceptability of the intervention and outcome measures and to provide data to estimate the parameters required to design the final intervention. DESIGN: A controlled before-and-after design following the Consolidated Standards of Reporting Trials 2010 statement for feasibility trials. SETTING: A surgical outpatient clinic in Sweden. PARTICIPANTS: Forty-one patients (aged 47-85) with breast cancer who were treated with ET. INTERVENTIONS: Eligible patients were assigned to the control group or intervention group, which included individual education material, an individualised learning plan and a personalised reminder letter using a person-centred approach. The intervention could be delivered as a telephone or digital follow-up during a 12-week follow-up. OUTCOME MEASURES: The aims were to determine the recruitment rate, assess the rate of retention, explore whether the intervention was delivered according to the protocol, assess the preferred form of educational support, rate of education sessions, length per education session and length between each education session, determine the distribution of education materials and assess completion rates of patient-reported instruments, including the General Self-efficacy Scale, the Quality of Care from the Patient's Perspective Questionnaire and the Memorial Symptom Assessment Scale. RESULTS: Eighty-six per cent of the patients in the intervention group completed the intervention and questionnaires 3 months after their inclusion. The call attendance was 90%. During the intervention, the contact nurse complied with the intervention protocol. For self-efficacy, symptoms and quality of care, there were no differences in effect size between the control and intervention groups. CONCLUSIONS: This intervention seems to be feasible and acceptable among patients.

Person-centered care content in medicine, occupational therapy, nursing, and physiotherapy education programs.

BACKGROUND: Although person-centered care (PCC) ensures high-quality care for patients, studies have shown that it is unevenly applied in clinical practice. The extent to which future health care providers are currently offered education in PCC at their universities is unclear. We aimed to clarify the PCC content offered to students as a basis for their understanding by exploring the PCC content of Swedish national study programs in medicine, nursing, occupational therapy, and physiotherapy. METHODS: Using a qualitative document analysis design, we sampled the steering documents from all higher education institutions (n = 48) with accreditation in medicine (n = 7), nursing (n = 25), occupational therapy (n = 8), or physiotherapy (n = 8) at a single time point. All national study programs (n = 4), local program syllabuses (n = 48), and local course syllabuses (n = 799) were reviewed using a 10-item protocol. RESULTS: We found no content related to PCC in the steering documents at the national level. At the local level, however, signs of PCC were identified in local program syllabuses and local course syllabuses. Seven of the 48 local program syllabuses (15%) included PCC in their intended learning outcomes. Eight of the 799 local course syllabuses (1%) contained course titles that included the phrase 'person-centered care,' and another 101 listed 142 intended learning outcomes referring to PCC. A total of 21 terms connected to PCC were found, and the term 'person-centered care' was most commonly used in the nursing programs and least commonly in the medical programs. CONCLUSIONS: There is a broad range in how the national study programs in Sweden have incorporated PCC. The implementation has been driven by a bottom-up strategy. A deliberate and standardized strategy is needed to ensure full implementation of PCC into clinical curricula in higher education.

An intervention mapping-based support program that empowers patients with endocrine therapy management.

BACKGROUND: For women diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is recommended. Patients experience diverse side effects, and difficulties in managing these side effects have been identified as obstacles for treatment continuation. The aim of this study was to describe the development of a support program for patients prescribed ET. METHODS: Intervention mapping (IM) a comprehensive theory-based approach was used in the support program development. A participatory design was used and four advisory groups was formed including both patients and healthcare professionals. RESULTS: This study employed the systematic stages of IM to develop a theory-based support program with the goal to empower patients prescribed ET to manage ETrelated symptoms and problems, and to illuminate the healthcare structure. The needs assessment identified three performance objectives: (1) Patients have knowledge of and understand their symptoms and their management strategies. (2) Patients have the knowledge and confidence to express their care needs and to ask for guidance from healthcare professionals. (3) Patients are active in and lead their healthcare process. CONCLUSION: This is a systematic developed model, built upon aspects of ET both from a patient´ perspective as well as from healthcare professionals' perspectives.

Development and evaluation of the measurement properties of a generic questionnaire measuring patient perceptions of person-centred care.

BACKGROUND: Implementation of person-centred care (PCC) is a challenging undertaking. Thus, a call has been issued for a robust and generic instrument to measure and enable evaluation of PCC across settings and patient groups. This study aimed to develop a generic questionnaire measuring patients' perceptions of PCC. Further aims were to evaluate its content and measurement properties using a mixed-methods approach entailing Rasch and qualitative content analyses. METHODS: The study was conducted in three iterative phases. Phase one included six key informants to gain a broad view of the concept. Phase two entailed a Delphi study involving two rounds with eight experts who generated ratings on relevance, readability, comprehensiveness and suggestions for revision. Data were analysed using the Item Content Validity Index in conjunction with qualitative comments to improve the questionnaire. Phase three was performed using a mixed-methods design. Quantitative data were collected from patients (n = 553) responding to the questionnaire who were recruited from six in- and outpatient care units in a health care region in Sweden. Data was analysed using the Rasch measurement model. Qualitative data were based on the respondents' free-text comments, cognitive interviews (n = 10) and field notes, and then analysed with deductive content analysis. RESULTS: A questionnaire was developed and operationalised based on the information given by key informants in phase one and then validated for its content by experts in phase two. In phase three Rasch analyses revealed problems with targeting, thresholds and two misfitting items. These problems were corroborated by data from the qualitative analyses, which also revealed some issues of wording and interpretation of items. When thresholds were resolved and two items removed, the questionnaire met the assumptions of the Rasch model. CONCLUSIONS: Experts gave the questionnaire content high ratings and it met measurement requirements assumed by the Rasch model after revisions. Those problems on targeting that remain need to be addressed in future studies. Meanwhile, we regard the questionnaire as of sufficient quality to be useful in benchmarking PCC.

Women's coping strategies during the first three months of adjuvant endocrine therapy for breast cancer.

Aim: The aim was to explore stressful events, experienced problems and used coping strategies during the first three months of undergoing ET. Design: This study used a mixed method design. Methods: A consecutive sample of 39 women newly diagnosed with breast cancer were included at the start of their adjuvant endocrine therapy. A daily coping assessment was used to create daily reports about stressful events or experienced problems and coping strategies. Results: The most frequently reported physical problems were sleeping difficulties. Anxiety was the most reported emotional problem. Patients used both emotion-and problem-focused coping, and sleeping difficulties were coped by relaxing, and anxiety was coped by thinking about something else. Conclusions: Patients experienced a variety of stressful events or problems during the first three months of endocrine therapy. They also used several coping strategies to endure the treatment.

Preparedness for colorectal cancer surgery and recovery through a person-centred information and communication intervention - A quasi-experimental longitudinal design.

To meet patients' information and communication needs over time in order to improve their recovery is particularly challenging for patients undergoing cancer surgery. The aim of the study was to evaluate whether an intervention with a person-centred approach to information and communication for patients diagnosed with colorectal cancer undergoing surgery can improve the patients' preparedness for surgery, discharge and recovery during six months following diagnosis and initial treatment. The intervention components involving a novel written interactive patient education material and person-centred communication was based on critical analysis of conventional information and communication for these patients. During 2014-2016, 488 consecutive patients undergoing elective surgery for colorectal cancer were enrolled in a quasi-experimental longitudinal study. In three hospitals, first a conventional care group (n = 250) was recruited, then the intervention was introduced, and finally the intervention group was recruited (n = 238). Patients' trajectories of preparedness for surgery and recovery (Preparedness for Colorectal Cancer Surgery Questionnaire-PCSQ) health related quality of life (EORTC QLQ-C30) and distress (NCCS Distress Thermometer) were evaluated based on self-reported data at five time points, from pre-surgery to 6 months. Length of hospital stay and patients' behavior in seeking health care pre- and post-surgery were extracted from patient records. Longitudinal structural equation models were used to test the hypothesized effects over time. Statistically significant positive effects were detected for two of the four PCSQ domains (patients searching for and making use of information, and making sense of the recovery) and for the role functioning domain of the EORTC QLQ-C30. Patients in the intervention group were also more likely to contact their assigned cancer "contact nurse" (a.k.a. nurse navigator) instead of contacting a nurse on duty at the ward or visiting the emergency department. In conclusion, the overall hypothesis was not confirmed. Further research is recommended on written and oral support tools to facilitate person-centred communication.

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition.

AIMS AND OBJECTIVES: To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this. BACKGROUND: Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents. DESIGN: A multicentre, cross-sectional study. METHODS: Caregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5-point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process. RESULTS: Greater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self-infused, had another family member with haemophilia or if the parent had more children. CONCLUSIONS: Parental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity. RELEVANCE TO CLINICAL PRACTICE: More psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists.

"It is not just any pill"-Women's experiences of endocrine therapy after breast cancer surgery.

OBJECTIVE: For patients diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is usually prescribed to reduce recurrence and mortality rates. Despite the benefits, compliance with treatment varies. The aim of this study was to provide qualitative data about women's experiences with ET after breast cancer surgery. METHODS: Twenty-five women, treated with Tamoxifen after breast cancer surgery, were interviewed in seven focus groups. Six open-ended questions were used to explore their experiences. The interviews were recorded, transcribed verbatim and analysed using inductive content analysis. RESULTS: The analysis resulted in three categories that described the women's experiences: the treatment "creates discomfort"; "promotes levels of management"; and "causes feelings of abandonment". Women's experiences of treatment could at first glance be seen as positive, as perceived protection, but after further analysis, a deeper meaning was identified: protection with reservation. When experiencing discomfort, the women tried to manage the situation, although the mode of management sometimes varied. The women reported that they needed support, but when the support did not appear, they felt as though they had been abandoned. Moreover, knowledge about side effects became an obstacle, as it could create fear of more severe symptoms. They also described that their disease was perceived by healthcare professionals as "cancer light". CONCLUSION: The information needs to be customised specifically to each person.

Challenges When Translating and Culturally Adapting a Measurement Instrument: The Suitability and Comprehensibility of Materials (SAM+CAM).

There is evidence that low suitability and comprehensibility of printed education materials (PEMs) affects patients' and relatives' ability to read and comprehend information. However, few instruments measure the suitability of written information, and none exist in the Swedish language. The aim was to describe the translation and adaptation of the Suitability and Comprehensibility of Materials (SAM+CAM) instrument into the Swedish language and health care context and to explore challenges related to this process. The SAM+CAM instrument was translated and culturally adapted in five steps: forward translation, synthesis, back translation, expert review, and pretests. Differences were found when translating and culturally adapting the SAM+CAM instrument in the areas of semantic, idiomatic, and experiences. Participants revealed several clarity inconsistencies between items. They also identified linguistic differences and unfamiliar wording; they found that the instrument was perplexing to use and lacked knowledge regarding the specific health care areas in the examined PEMs. The cultural perspective is a significant factor that influences the usability of PEMs. Therefore, expert groups of participants are useful when adapting instruments to different cultures. The Swedish SAM+CAM instrument requires experienced and highly qualified raters.

Reaching Independence Through Forced Learning: Learning Processes and Illness Management in Parents of Children Affected by Hemophilia.

Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents' learning processes and illness management in daily life during the first year after the start of their child's treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents' learning process and their experiences of the challenges during the first year after start of treatment. Incentives for learning were characterized by a longing to reach independence and regain control of one's life situation. The emerging key incentive for learning was a desire to become independent of health care professionals. Early home treatment reduced the impact of the illness, and by supporting parents in different ways during the learning process, health care professionals can promote the parents' trajectory toward independency.

Exploration of dynamics in a complex person-centred intervention process based on health professionals' perspectives.

BACKGROUND: The assessment and evaluation of practical and sustainable development of health care has become a major focus of investigation in health services research. A key challenge for researchers as well as decision-makers in health care is to understand mechanisms influencing how complex interventions work and become embedded in practice, which is significant for both evaluation and later implementation. In this study, we explored nurses' and surgeons' perspectives on performing and participating in a complex multi-centre person-centred intervention process that aimed to support patients diagnosed with colorectal cancer to feel prepared for surgery, discharge and recovery. METHOD: Data consisted of retrospective interviews with 20 professionals after the intervention, supplemented with prospective conversational data and field notes from workshops and follow-up meetings (n = 51). The data were analysed to construct patterns in line with interpretive description. RESULTS: Although the participants highly valued components of the intervention, the results reveal influencing mechanisms underlying the functioning of the intervention, including multiple objectives, unclear mandates and competing professional logics. The results also reveal variations in processing the intervention focused on differences in using and talking about intervention components. CONCLUSIONS: The study indicates there are significant areas of ambiguity in understanding how theory-based complex clinical interventions work and in how interventions are socially constructed and co-created by professionals' experiences, assumptions about own professional practice, contextual conditions and the researchers' intentions. This process evaluation reveals insights into reasons for success or failure and contextual aspects associated with variations in outcomes. Thus, there is a need for further interpretive inquiry, and not only descriptive studies, of the multifaceted characters of complex clinical interventions and how the intervention components are actually shaped in constantly shifting contexts.

Prepared for surgery - Communication in nurses' preoperative consultations with patients undergoing surgery for colorectal cancer after a person-centred intervention.

AIMS AND OBJECTIVES: To describe preoperative communication after a person-centred intervention in nurses' consultations with patients undergoing surgery for colorectal cancer. BACKGROUND: Patients all over the world scheduled for surgery are referred to preoperative consultations with healthcare professionals. The goal is to assess the risk of perioperative complications, improving quality of care and enabling patients to be prepared for surgery and recovery. A person-centred intervention was developed, which consisted of an interactive written patient education material and person-centred communication. DESIGN: An explorative quantitative and qualitative study based on 18 audio-taped transcriptions. METHODS: Eighteen patients preoperative nursing consultations at three Swedish hospitals were analysed quantitatively regarding structure: words, time, phases, questions, discursive space, and qualitatively: topics and how the person-centred communication appeared in the consultations. RESULTS: The median time for consultations was 27 min (range 13-64 min). The nurses used two-thirds of the discursive space in the consultations with the patients. The patient education material was used as a support to structure the consultation and discuss sensitive and difficult issues. Seven topics were discussed during the consultation. Two different approaches to communication were identified: Talking with the patient versus Talking to the patient. Talking with the patient (seen as person-centred communication) was defined as: listening to the narrative and confirming each other, raising difficult topics, seeing each other as persons, building on strengths and resources, preparing for surgery and asking open questions. CONCLUSION: Ways of communicating influence how the preoperative consultation develops. Talking with the patient could be seen as person-centred communication in the preoperative care, and when using this approach, the intervention purpose of person-centred communication was met. RELEVANCE TO CLINICAL PRACTICE: Education in person-centred communication is important for nurses to improve their skills in performing preoperative consultations.

Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study.

BACKGROUND: Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. METHODS: This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. RESULTS: THIS STUDY HAS IDENTIFIED DIFFERENT SPHERES IN WHICH PEOPLE DIAGNOSED WITH ADVANCED GASTROINTESTINAL CANCER VACILLATE BETWEEN EXISTENTIAL UNCERTAINTY AND CERTAINTY: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people's lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves -a new experience that lays the foundation for development of knowledge, personal learning and growth. CONCLUSIONS: People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.

Relatives' information needs and the characteristics of their search for information--in the words of relatives of stroke survivors.

AIM AND OBJECTIVES: To explore relatives' information needs and the characteristics of their information-seeking process shortly after the stroke event and six months later. BACKGROUND: Providing relatives of stroke survivors with information is important, as lack of information increases their uncertainty and risk becoming the 'second patient in the family' and early death. Therefore, it is essential to be aware of relatives' information needs and information-seeking process the first six months after stroke. DESIGN: This qualitative study has a descriptive design. METHOD: Open-ended interviews were conducted with sixteen relatives after stroke survivor's admission to stroke unit and six months later with nine of these relatives. Data were analysed by means of content analysis. RESULTS: The identified information needs covered the spectrum from stroke survivor's medical condition because nurses' actions to relatives' changed health and life situation. Furthermore, relatives' information-seeking process was found to be related to their level of personal involvement, situational circumstances, different forms of knowledge and sources of information. CONCLUSIONS: Relatives' search for information emerges when health and lifestyle changes occur in survivors or themselves. It is important that this information affect them personally. Also, they need to develop different forms of knowledge when they cannot trust their own competences. As a result, instead of following established curricula based on their beliefs of relatives' information needs, nurses need to practice on identifying relatives' information needs. RELEVANCE TO PRACTICE: Different information needs and characteristics described in the study can serve as guidance in the development and implementation of pedagogical interventions to support relatives of stroke survivors. One pedagogical implication is to explore what a specific relative wants to know by how he/she talks or thinks about it. Thus, it must be taken into consideration that level of personal involvement, situational circumstances, sources of information and factual knowledge, understanding and skills are intertwined.

Like a shadow--on becoming a stroke victim's relative.

Stroke is the third leading cause of death and disability in the western world. Given the ageing population in Sweden, the number of people suffering from stroke is likely to increase in the future. Stroke alters the lives of both patients and their relatives. Few studies have explored first time affected relatives' experiences of suddenly becoming a relative to a stroke victim, before the relatives decide whether or not to become informal carers. The aim of this study was to illuminate the meaning of going from being just a relative to gradually becoming a relative to a stroke victim from the time of the stroke event and the first weeks on. Sixteen relatives were interviewed about their experiences regarding what it was like to become a relative of a stroke victim from the time of the onset of the illness to the day of the interview. Using a phenomenological hermeneutic method, two essential main themes emerged to describe the relatives' experience: (i) being in chaos and (ii) searching for order in chaos. The findings reveal that relatives reach a 'turning point'. The 'turning point' arises when the relatives stay close to the stroke victim, get aware of their own strength and actively seek out caregivers to restore order and stability to the chaotic situation they are in. At the 'turning point', the relatives start their journey to restore order and stability of the chaotic life situation. Caregivers need to pay more attention and be more sensitive to relatives to increase their possibilities of restoring order and stability in their lives. The results contribute to facilitating the caregivers' work by showing that the time is ripe for initiating pedagogical work when the relatives start to mobilise themselves.