Lost in the loop - a qualitative study on patient experiences of care in standardized cancer patient pathways.

BACKGROUND: The Norwegian health authorities introduced standardized cancer patient pathways (CPPs) in 2015, aiming to reduce practice variations across hospitals and regions, and improve the continuity, coordination and overall quality of the health care service provided to cancer patients. There has been few studies investigating this change, and that have looked into the organisational and economic benefits of standardized pathways, however the element of care and the patient perspective has been especially neglected. This study explored the care element in cancer patient pathways through an in-depth study of patient experiences. METHODS: The patients were enrolled approximately three years after the introduction of standardized CPPs in Norway. Through a qualitative design with in-depth interviews, a total of 21 interviews were conducted with seven patients between 2018 and 2020. The first interview took place after the diagnosis was established and before treatment, the second interview during treatment, and the final interview approximately one year after the completion of active treatment. The empirical catchment area was eastern Norway. Data were analysed using a theoretical thematic analysis. RESULTS: This study sheds light on the complex challenges patients' faces, while navigating CPPs, including the need for better transition support, improved coordination and continuity in care, and a more holistic approach that encompasses emotional well-being and family support. Three overarching themes were identified: [1] Navigating CPPs: patient care and transition challenges, [2] Fragmented cancer care: challenges in coordination and continuity [3] Unmet needs and overlooked opportunities in CPPs. CONCLUSIONS: Patients experience that cancer patient pathways offer good medical treatment, but that the care element deserves more attention. Current CPPs are trapped in a logic of choice, preventing room for the element of care to receive the attention it requires for the patient to truly experience holistic person-centred care and continuous, well-coordinated services. Based in our study we argue there is a need to look into the missed opportunities for using the CPPs as points of departure for more holistic collaborative models for cancer care.

An emotional roller coaster - family members' experiences of being a caregiver throughout a cancer trajectory.

PURPOSE: To explore family members' experiences of caregiving throughout a cancer trajectory from diagnosis until around one year after chemotherapy and radiation treatment ended. METHOD: We conducted a longitudinal qualitative study using in-depth interviews with 13 family members at one to three points of time: before, during, and after treatment. To analyse the interviews, we leaned on Braun and Clark procedure for thematic analysis. RESULT: The analysis revealed three themes in family members' experiences of being a caregiver to a cancer patient throughout a cancer trajectory. These were: (1) From the time of diagnosis-overwhelming and uncertain; (2) During and after treatment-invisible and not involved; (3) Throughout the cancer trajectory-an emotional roller coaster. CONCLUSION: The results indicated that the family members felt invisible and not involved and they experienced being a caregiver throughout the cancer trajectory as an emotional roller coaster. Our empirical findings thus indicate that in cancer care, family perspectives are yet to be implemented in daily practice. This is in contrast to explicit goals in current health policies underlining support and involvement of family members as a core aspect in cancer care.

In Limbo: Seven Families' Experiences of Encounter with Cancer Care in Norway.

INTRODUCTION: Like many other countries, Norway has seen a shift from inpatient to outpatient cancer care, with pathways aimed at improving the integration and coordination of health services. This study explores the perspectives of seven patients and their family members in light of this change. We focus on one particular phase of the pathway: the first encounter. Our interviews were set in the period from referral until the start of treatment. METHODS: Nineteen individual in-depth interviews were conducted in seven families. Seven patients with cancer and 12 family members were interviewed. RESULTS: Three categories of experiences stood out in the empirical material: 'Being in between different health professionals', 'Overwhelmed by written and oral information' and 'Lack of involvement'. CONCLUSION: This study provides insight into families' experiences with cancer care from referral until the start of treatment. Our findings indicate that families often experience cancer care as fragmented and confusing. Although evaluations have shown that the introduction of cancer pathways seems to have a positive effect on waiting times and standardization of examinations across hospitals and regions, there is still potential for improvement in coordination between services, family involvement, and emotional and practical support. We argue that our findings highlight the tension between two ideals of professional care: standardization and patient-centredness. The study illustrates shortcomings in translating the ideal of patient-centredness into professional practice.

Associations Between Immigration-Related User Factors and eHealth Activities for Self-Care: Case of First-Generation Immigrants From Pakistan in the Oslo Area, Norway.

BACKGROUND: Immigrant populations are often disproportionally affected by chronic diseases, such as type 2 diabetes mellitus (T2DM). Use of information and communication technology (ICT) is one promising approach for better self-care of T2DM to mitigate the social health inequalities, if designed for a wider population. However, knowledge is scarce about immigrant populations' diverse electronic health (eHealth) activities for self-care, especially in European countries. OBJECTIVE: With a target group of first-generation immigrants from Pakistan in the Oslo area, Norway, we aimed to understand their diverse eHealth activities for T2DM self-care in relation to immigration-related user factors specific to this target group: proficiency in relevant languages (Urdu, Norwegian, English), length of residence in Norway, and diagnosis of T2DM compared with general user factors (age, gender, education and digital skills, and self-rated health status). METHODS: Data were from a survey among the target population (N=176) conducted in 2015-2016. Using logistic regression, we analyzed associations between user factors and experiences of each of the following eHealth activities for T2DM self-care in the last 12 months: first, information seeking by (1) search engines and (2) Web portals or email subscriptions; second, communication and consultation (1) by closed conversation with a few acquaintances using ICT and (2) on social network services; and third, active decision making by using apps for (1) tracking health information and (2) self-assessment of health status. Using Poisson regression, we also assessed the relationship between user factors and variety of eHealth activities experienced. The Bonferroni correction was used to address the multiple testing problem. RESULTS: Regression analyses yielded the following significantly positive associations: between Urdu literacy and (1) information seeking by Web portals or email subscriptions (odds ratio [OR] 2.155, 95% CI 1.388-3.344), (2) communication and consultation on social network services (OR 5.697, 95% CI 2.487-13.053), and (3) variety (estimate=0.350, 95% CI 0.148-0.552); between length of residence in Norway and (1) communication and consultation by closed conversation with a few acquaintances using ICT (OR 1.728, 95% CI 1.193-2.503), (2) communication and consultation on social network services (OR 2.098, 95% CI 1.265-3.480), and (3) variety (estimate=0.270, 95% CI 0.117-0.424); between Norwegian language proficiency and active decision making by using apps for self-assessment of health status (OR 2.285, 95% CI 1.294-4.036); between education and digital skills and active decision making by using apps for tracking health information (OR 3.930, 95% CI 1.627-9.492); and between being a female and communication and consultation by closed conversation with a few acquaintances using ICT (OR 2.883, 95% CI 1.335-6.227). CONCLUSIONS: This study implies immigration-related factors may confound associations between general user factors and eHealth activities. Further studies are needed to explore the influence of immigration-related user factors for eHealth activities in other immigrant groups and countries. INTERNATIONAL REGISTERED REPORT: RR2-DOI 10.2196/resprot.5468.

The Impact of Telementoring.

Telementoring is a well-known practice in surgical training, and its impact is traditionally related to individual surgeons' performance and the quality of the procedure. The objective of this study was to explore telementoring in a wider organisational context. This paper reports on an ethnographic study carried out during 2014-2016 in Norway, combining observations, interviews, focus groups and field notes. We followed the surgical training of a specialist candidate at a medium-sized surgical ward. The training successfully took place through the use of telementoring, comprising updated standards for a surgical procedure that ensured minimum invasive surgery for a vulnerable patient group. We observed that telementoring was a necessary and important element in ongoing quality improvement processes at the ward, and its impact at the organisational level was important. In fact, a series of co-existing interwoven elements was necessary to normalise the new procedure in question. We conclude that the use of telementoring linking international expertise to local contexts is one of the factors that can facilitate and speed up quality improvement processes in small- to medium-sized surgical wards.

Correction: The Association Between Commonly Investigated User Factors and Various Types of eHealth Use for Self-Care of Type 2 Diabetes: Case of First-Generation Immigrants From Pakistan in the Oslo Area, Norway.

[This corrects the article DOI: 10.2196/publichealth.7009.].

The Association Between Commonly Investigated User Factors and Various Types of eHealth Use for Self-Care of Type 2 Diabetes: Case of First-Generation Immigrants From Pakistan in the Oslo Area, Norway.

BACKGROUND: Sociodemographic and health-related factors are often investigated for their association with the active use of electronic health (eHealth). The importance of such factors has been found to vary, depending on the purpose or means of eHealth and the target user groups. Pakistanis are one of the biggest immigrant groups in the Oslo area, Norway. Due to an especially high risk of developing type 2 diabetes (T2D) among this population, knowledge about their use of eHealth for T2D self-management and prevention (self-care) will be valuable for both understanding this vulnerable group and for developing effective eHealth services. OBJECTIVE: The aim of this study was to examine how commonly were the nine types of eHealth for T2D self-care being used among our target group, the first-generation Pakistani immigrants living in the Oslo area. The nine types of eHealth use are divided into three broad categories based on their purpose: information seeking, communication, and active self-care. We also aimed to investigate how sociodemographic factors, as well as self-assessment of health status and digital skills are associated with the use of eHealth in this group. METHODS: A survey was carried out in the form of individual structured interviews from September 2015 to January 2016 (N=176). For this study, dichotomous data about whether or not an informant had used each of the nine types of eHealth in the last 12 months and the total number of positive answers were used as dependent variables in a regression analysis. The independent variables were age, gender, total years of education, digital skills (represented by frequency of asking for help when using information and communication technology [ICT]), and self-assessment of health status. Principal component analyses were applied to make categories of independent variables to avoid multicollinearity. RESULTS: Principal component analysis yielded three components: knowledge, comprising total years of education and digital skills; health, comprising age and self-assessment of health status; and gender, as being a female. With the exception of closed conversation with a few specific acquaintances about self-care of T2D (negatively associated, P=.02) and the use of ICT for relevant information-seeking by using search engines (not associated, P=.18), the knowledge component was positively associated with all the other dependent variables. The health component was negatively associated with the use of ICT for closed conversation with a few specific acquaintances about self-care of T2D (P=.01) but not associated with the other dependent variables. Gender component showed no association with any of the dependent variables. CONCLUSIONS: In our sample, knowledge, as a composite measure of education and digital skills, was found to be the main factor associated with eHealth use regarding T2D self-care. Enhancing digital skills would encourage and support more active use of eHealth for T2D self-care.

eHealth Use Among First-Generation Immigrants From Pakistan in the Oslo Area, Norway, With Focus on Diabetes: Survey Protocol.

BACKGROUND: A variety of eHealth services are available and commonly used by the general public. eHealth has the potential to engage and empower people with managing their health. The prerequisite is, however, that eHealth services are adapted to the sociocultural heterogeneity of the user base and are available in a language and with contents that fit the users' preference, skills, and abilities. Pakistani immigrants in the Oslo area, Norway, have a much higher risk of Type-2 diabetes (T2D) than their Norwegian counterparts do. In spite of having access to information and communication technology (ICT) and the Internet, ICT skills in this population are reported to be relatively low. Further, there is insufficient information about their use of and attitudes toward eHealth services, necessitating investigation of this group in particular. OBJECTIVE: This study targets first-generation immigrants from Pakistan living in the Oslo area and examines their use of and attitudes toward eHealth services, specifically: information searches, communication using ICT, and use of ICT for self-management or decision making, all concerning T2D. METHODS: Due to a high prevalence of low literacy among the target population, we employed questionnaire-based individual interviews. The questionnaire was developed by implementing potentially relevant theoretical constructs (technology acceptance model (TAM) and health belief model (HBM)) as measures. To explore issues around language, culture, and general ICT skills, we also implemented questions that we assume were particularly relevant in the context studied but do not appear in any theoretical frameworks. The questionnaire was revised to reflect results of a pilot study involving 10 participants. We employed culturally sensitive sampling methods to reach informants who could otherwise fail to be included in the survey. RESULTS: This paper presents a survey protocol. The data collection is ongoing. The aim is to collect 200 responses in total by March 2016. CONCLUSIONS: For eHealth to become an influential social innovation, equal access to eHealth services regardless of users' language, culture, and ICT skills is a prerequisite. Results from this study will be of importance for understanding how people who may not maximally benefit from eHealth services today could be targeted in the future.

Adherence and factors affecting satisfaction in long-term telerehabilitation for patients with chronic obstructive pulmonary disease: a mixed methods study.

BACKGROUND: Telemedicine may increase accessibility to pulmonary rehabilitation in chronic obstructive pulmonary disease (COPD), thus enhancing long-term exercise maintenance. We aimed to explore COPD patients' adherence and experiences in long-term telerehabilitation to understand factors affecting satisfaction and potential for service improvements. METHODS: A two-year pilot study with 10 patients with COPD was conducted. The intervention included treadmill exercise training at home and a webpage for telemonitoring and self-management combined with weekly videoconferencing sessions with a physiotherapist. We conducted four separate series of data collection. Adherence was measured in terms of frequency of registrations on the webpage. Factors affecting satisfaction and adherence, together with potential for service improvements, were explored through two semi-structured focus groups and an individual open-ended questionnaire. Qualitative data were analysed by systematic text condensation. User friendliness was measured by the means of a usability questionnaire. RESULTS: On average, participants registered 3.0 symptom reports/week in a web-based diary and 1.7 training sessions/week. Adherence rate decreased during the second year. Four major themes regarding factors affecting satisfaction, adherence and potential improvements of the intervention emerged: (i) experienced health benefits; (ii) increased self-efficacy and independence; and (iii) emotional safety due to regular meetings and access to special competence; (iv) maintenance of motivation. Participants were generally highly satisfied with the technical components of the telerehabilitation intervention. CONCLUSIONS: Long-term adherence to telerehabilitation in COPD was maintained for a two-year period. Satisfaction was supported by experienced health benefits, self-efficacy, and emotional safety. Maintenance of motivation was a challenge and might have affected long-term adherence. Four key factors of potential improvements in long-term telerehabilitation were identified: (i) adherence to different components of the telerehabilitation intervention is dependent on the level of focus provided by the health personnel involved; (ii) the potential for regularity that lies within the technology should be exploited to avoid relapses after vacation; (iii) motivation might be increased by tailoring individual consultations to support experiences of good health and meet individual goals and motivational strategies; (iv) interactive functionalities or gaming tools might provide peer-support, peer-modelling and enhance motivation.

User interface and patient involvement.

Increased patient involvement is a goal in contemporary health care, and of importance to the development of patient oriented ICT. In this paper we discuss how the design of patient-user interfaces can affect patient involvement. Our discussion is based on 12 semi-structured interviews with patient users of a web-based solution for patient--doctor communication piloted in Norway. We argue ICT solutions offering a choice of user interfaces on the patient side are preferable to ensure individual accommodation and a high degree of patient involvement. When introducing web-based tools for patient--health professional communication a free-text option should be provided to the patient users.

Videoconferencing in acute and non-acute medical work.

In this paper, we explore the use of videoconferences (VCs) in medical practice, and discuss how characteristics of the context affect the use of VCs. Forty-seven VCs were observed and videotaped, and 41 semi-structured interviews were conducted. Our findings suggest the use of VCs for acute collaborative work differs from the non-acute use of VCs. Non-acute use facilitates collaboration throughout the entire patient trajectory, while acute use facilitates medical problem solving in the moment. Strict specialization and division of labor reduce the cases to discuss and the discussion of complex treatment trajectories. Acute collaborative work is past and present work, while non-acute collaboration reflects past, present, and future treatment, that is, an overall trajectory.