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Mari Portillo
School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK

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Review
Published: 08 July 2021 in International Journal of Environmental Research and Public Health
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(1) Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand “the process of living with LTCs” from a family perspective. (2) Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. (3) Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. (4) Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.

ACS Style

Patricia Marín-Maicas; Silvia Corchón; Leire Ambrosio; Mari Portillo. Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis. International Journal of Environmental Research and Public Health 2021, 18, 7294 .

AMA Style

Patricia Marín-Maicas, Silvia Corchón, Leire Ambrosio, Mari Portillo. Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis. International Journal of Environmental Research and Public Health. 2021; 18 (14):7294.

Chicago/Turabian Style

Patricia Marín-Maicas; Silvia Corchón; Leire Ambrosio; Mari Portillo. 2021. "Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis." International Journal of Environmental Research and Public Health 18, no. 14: 7294.

Journal article
Published: 30 June 2021 in Journal of Foot and Ankle Research
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Background In response to the COVID-19 pandemic, populations were advised to remain at home to control viral spread. Government-mandated restrictions on free movement affected individuals’ engagement with physical activity, with reported increases leading to biopsychosocial health benefits and conversely increased sedentary behaviour leading to poorer health. Good foot health is key to enabling physical activity and maximal participation in activities of occupation and daily living. Methods A population-based cross-sectional study was performed, using a web-based platform. Quantitative and qualitative data were captured through responses to closed and open survey questions. Anybody with a foot health condition was eligible to participate in the online survey. Links were sent through professional networks, support groups and charities, using a snowball strategy to maximise participation. Results Two hundred fifty-five respondents completed the survey. Most (n = 193, 75.69%) reported an ongoing foot pain or problem that had been present for 4 weeks or longer, whilst 49 respondents (19.22%) noted a new pain or problem. Pain was the most frequently reported symptom (n = 139, 54.51%), whilst change in appearance of the foot was also commonly reported (n = 122, 47.84%), often alongside the observable presence of swelling. Musculoskeletal foot symptoms were frequently reported (n = 123, 48%), and were significantly associated with reported reduced physical activity (X2 = 6.61, p = 0.010). Following qualitative analysis five themes and 11 subthemes emerged, informed by 49 independent codes. A central theme of lockdown disrupting support networks, both formal (healthcare providers) and informal (friends or family members) emerged. The 5 sub-themes were: 1. foot pain is a constant companion, 2. self-care, 3. ‘cope or crumble’ scenarios, 4. future intent to access healthcare and 5. reduced ability to undertake physical activity. Conclusions Pain was the most frequently reported foot problem during COVID-19 lockdown restriction. Lockdown restrictions disrupted support networks integral to maintaining foot health. Poor foot health impacted people’s ability to remain physically active. Complaints previously considered relatively ‘minor’ such as support for skin and nail care, were found to be exacerbated by restricted support networks, leading to greater negative impact.

ACS Style

Lindsey Cherry; Lucy Gates; David Culliford; Karen Walker-Bone; Mari Carmen Portillo. COVID-19 lockdown disrupts support networks integral to maintaining foot health: a mixed-methods study. Journal of Foot and Ankle Research 2021, 14, 1 -10.

AMA Style

Lindsey Cherry, Lucy Gates, David Culliford, Karen Walker-Bone, Mari Carmen Portillo. COVID-19 lockdown disrupts support networks integral to maintaining foot health: a mixed-methods study. Journal of Foot and Ankle Research. 2021; 14 (1):1-10.

Chicago/Turabian Style

Lindsey Cherry; Lucy Gates; David Culliford; Karen Walker-Bone; Mari Carmen Portillo. 2021. "COVID-19 lockdown disrupts support networks integral to maintaining foot health: a mixed-methods study." Journal of Foot and Ankle Research 14, no. 1: 1-10.

Research article
Published: 15 March 2021 in Nursing Open
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Aim To cross‐culturally adapt and determine the preliminary psychometric properties of the English version of the LwLTC Scale in people living with long‐term conditions in the UK. Design Cross‐cultural adaptation and cross‐sectional study. Methods Forty‐nine patients with five long‐term conditions were included in the pilot study. Patients completed the English version of the LwLTC Scale and a bespoke questionnaire related to the scale. Feasibility/acceptability, internal consistency and construct validity were analysed. Results 59.2% of participants were female, with an average age of 65.9 (SD = 12.30). Cronbach's alpha coefficient ranged between 0.50 and 0.84. Content validity showed that the English version of the LwLTC Scale was useful even negative items were identified. Conclusion These preliminary psychometric properties are satisfactory and promising. Further psychometric analyses are needed to verify them in a larger and more representative sample size during the main validation study, which is now in process.

ACS Style

Leire Ambrosio; Kelly Hislop‐Lennie; Hannah Barker; David Culliford; Mari Carmen Portillo. Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK. Nursing Open 2021, 8, 1909 -1919.

AMA Style

Leire Ambrosio, Kelly Hislop‐Lennie, Hannah Barker, David Culliford, Mari Carmen Portillo. Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK. Nursing Open. 2021; 8 (4):1909-1919.

Chicago/Turabian Style

Leire Ambrosio; Kelly Hislop‐Lennie; Hannah Barker; David Culliford; Mari Carmen Portillo. 2021. "Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK." Nursing Open 8, no. 4: 1909-1919.

Editorial
Published: 29 January 2021 in Parkinson's Disease
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Parkinson’s disease (PD) is the second most common neurodegenerative disorder worldwide with a prevalence of 1% in populations over 60 years of age in developed countries and affecting 10 million people worldwide [1, 2]. Compared to other neurological conditions, PD has had the highest growth in terms of disability, death, and prevalence, and it is estimated to increase to 13 million by 2040 [3]. The experience of living with PD varies from person to person and captures complex issues that go beyond biomedical management and require a comprehensive approach involving the family, overcoming health inequalities, and ensuring sustainability in policy and health/social care. In line with this, in this special issue, we aimed to explore aspects related to PD management and innovation from a health and social care perspective. A total of 16 manuscripts were submitted, from which 9 were accepted for publication (1 review and 8 original studies). Accepted manuscripts covered a wide variety of topics such as the assessment and management of motor/nonmotor and cognitive symptoms and their impact on patients’ and carers’ QoL, proposals for integrated care models, and the psychosocial impact of PD and related interventions. The diversity of PD symptoms and impairment, progressive nature, and psychosocial impact lead to a burden and a major decrease in the QoL not only for patients but equally for carers [4–6]. Therefore, targeted assessments to register the complexity of PD become an important asset for PD management as highlighted in four papers in this special issue. In a cross-sectional study, Sun and colleagues focused on the clinical assessment of the development of motor symptoms and the use of levodopa for their management. Based on their results, they suggested—in the case of levodopa-induced motor complications—to consider delaying or reducing the dose of levodopa. Pereiro et al. explored the connections between the stages of PD with the presence of cognitive and motor skills, being more important maintaining both skills in comparison with fluency and single motor skills. This revealed relevant implications for clinical practice to determine PD progression and the need to introduce more adequate assessments in research with expected benefits in the evaluation of some interventions. However, we must remain cautious interpreting these findings considering the small scale of the research reported. Jenny et al. also undertook a quantitative study determining the impact of cognitive complaints on QoL from the patients’ perspective. Based on a survey of 46 patients, they compared subjective memory complaints with QoL, using the PDQ 39 instrument. Their main hypothesis that subjective memory complaints could be associated with QoL was dismissed. Notwithstanding, they show an association between subjective memory complaints and cognitive QoL, and likewise, they found an association with anxiety and depression. Jenny et al. also addressed the need for subjective memory complaint validated tools to enhance accuracy in referrals to specialized PD care. Finally, Klietz et al. looked at the associations/correlations between motor and nonmotor and cognitive symptoms and health-related QoL and carer burden in advanced PD. Main findings indicated that motor symptoms are clearly associated with the carer’s burden more than other symptoms in PD, and all motor and nonmotor have a similar impact on health-related QoL of patients. Impaired attentional functioning in patients with PD also affected carers in equal proportion. This clearly highlights a clinical priority, which is to understand PD symptomatology and draw management plans including the carer’s needs. Integrating instruments that contemplate the needs of both the person with PD and the carer in routine care could result in more optimal healthcare utilization without sacrificing QoL and economic costs. This could also ensure more effective risk stratification and early identification of people with higher needs for more complex care coordination and with high or low risk for poor self-management, facilitating the referral process and points of support for the family unit. Therefore, the impact of PD on patients and carers as a unit and how they access healthcare services and resources in the community should not be overseen [4]. Being a caregiver to a person with PD often causes a significant strain on the family member, and studies show that the everyday lives of caregivers are often negatively affected, including a decrease in QoL and psychiatric symptoms [7, 8]. In this special issue, two papers explored carers’ psychosocial adjustment to PD and QoL and their participation in psychosocial interventions. The paper by Lopes Dos Santos and colleagues in this special issue reports on an observational comparative study of the psychosocial adjustment of caregivers of persons with either dementia or PD. Overall, they reported the perceived psychosocial adjustment to the condition to be good, which is somewhat different from the reports in other studies. Lopes Dos Santos et al. did find caregivers to people with dementia to be more vulnerable than the other group, also reporting lower satisfaction with life than caregivers to people with PD. In their study, the participants with PD did not have dementia, which, as the authors reflected, calls for special attention because dementia is common in PD. Thus, as the people with PD included in this study had no cognitive decline, this could mean that caregivers of people with PD with cognitive decline could be more vulnerable. Additionally, Prado et al. presented an innovative point of view about the level of participation of carers in research interventions or programs that are normally designed for people with PD through a mixed-methods research design. The authors concretely looked at psychosocial interventions like dancing, which have become...

ACS Style

Mari Carmen Portillo; Anita Haahr; M. Victoria Navarta-Sánchez. Management, Levels of Support, Quality of Life, and Social Inclusion in Parkinson’s Disease: Interventions, Innovation, and Practice Development. Parkinson's Disease 2021, 2021, 1 -4.

AMA Style

Mari Carmen Portillo, Anita Haahr, M. Victoria Navarta-Sánchez. Management, Levels of Support, Quality of Life, and Social Inclusion in Parkinson’s Disease: Interventions, Innovation, and Practice Development. Parkinson's Disease. 2021; 2021 ():1-4.

Chicago/Turabian Style

Mari Carmen Portillo; Anita Haahr; M. Victoria Navarta-Sánchez. 2021. "Management, Levels of Support, Quality of Life, and Social Inclusion in Parkinson’s Disease: Interventions, Innovation, and Practice Development." Parkinson's Disease 2021, no. : 1-4.

Research article
Published: 21 November 2020 in Nursing Open
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Aim To understand and describe the experiences and perceptions of migrant Spanish nurses working in the UK. Design Online survey with open‐ended questions. Methods A total of 371 participants were recruited from online groups related to Spanish nurses working in the UK. Results Four themes emerged from their content analysis: “Motivations for emigration: running away from job insecurity and unemployment,” “Professional recognition,” “Seeking better life stability” and “Future neediness: between a rock and a hard place.” In these results, professional recognition was highlighted as a reason to stay in the host country, although the uncertainty represented by Brexit is reversing the migration trend that began years ago. Policymakers should be aware of these experiences to promote strategies and programmes, which encourage inclusion in the host country and will help these nurses in their transition process.

ACS Style

Miguel Rodriguez‐Arrastia; Carmen Ropero‐Padilla; Cayetano Fernández‐Sola; Mari Carmen Portillo. Nursing emigration in the United Kingdom: A qualitative exploration of the Spanish nursing community. Nursing Open 2020, 8, 675 -687.

AMA Style

Miguel Rodriguez‐Arrastia, Carmen Ropero‐Padilla, Cayetano Fernández‐Sola, Mari Carmen Portillo. Nursing emigration in the United Kingdom: A qualitative exploration of the Spanish nursing community. Nursing Open. 2020; 8 (2):675-687.

Chicago/Turabian Style

Miguel Rodriguez‐Arrastia; Carmen Ropero‐Padilla; Cayetano Fernández‐Sola; Mari Carmen Portillo. 2020. "Nursing emigration in the United Kingdom: A qualitative exploration of the Spanish nursing community." Nursing Open 8, no. 2: 675-687.

Original research
Published: 15 August 2020 in Journal of Advanced Nursing
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Aim To evaluate the effects of a psychoeducational intervention compared with an education programme to strengthen quality of life, psychosocial adjustment, and coping in people with Parkinson's disease and their informal caregivers. Design A quasi‐experimental study was performed with repeated measures at baseline, after the intervention and 6 months post‐intervention. Methods The study was carried out at seven primary care centres from 2015‐2017. A total of 140 people with Parkinson's and 127 informal caregivers were allocated to the experimental and the control groups. The experimental group received a 9‐week psychoeducational intervention, whereas the control group received a 5‐week education programme. Repeated measures ANOVA were used to test differences in quality of life, psychosocial adjustment, and coping between the experimental and control groups and over time. Results Patients and informal caregivers in both the experimental and control groups showed significantly better psychosocial adjustment at the post‐intervention measurement compared with baseline data. We also found significantly greater quality of life in patients and coping skills in caregivers after the end of the interventions in the experimental and control groups. Nevertheless, no significant differences were identified on the outcomes at the 6‐month post‐intervention measurement. Conclusion The effect of the psychoeducational intervention was not different from the effect of the education programme. The strategies applied in both interventions followed a group approach led by a multidisciplinary team covering information about PD, healthy lifestyles, and social resources. They might be easily sustained in Primary Care to improve care for people with Parkinson's and informal caregivers.

ACS Style

María Victoria Navarta‐Sánchez; Leire Ambrosio; Mari Carmen Portillo; Maria Eugenia Ursúa; Juana M. Senosiain; Mario Riverol. Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study. Journal of Advanced Nursing 2020, 76, 1 .

AMA Style

María Victoria Navarta‐Sánchez, Leire Ambrosio, Mari Carmen Portillo, Maria Eugenia Ursúa, Juana M. Senosiain, Mario Riverol. Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study. Journal of Advanced Nursing. 2020; 76 (10):1.

Chicago/Turabian Style

María Victoria Navarta‐Sánchez; Leire Ambrosio; Mari Carmen Portillo; Maria Eugenia Ursúa; Juana M. Senosiain; Mario Riverol. 2020. "Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study." Journal of Advanced Nursing 76, no. 10: 1.

Original article
Published: 11 August 2020 in Health & Social Care in the Community
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Psychosocial adjustment to a complex and disabling long‐term condition like Parkinson´s disease is a complex, dynamic, cyclical and interactive process. Family caregivers, face multiple challenges that require a significant effort in terms of psychosocial adjustment, which must be considered by healthcare professionals in order to provide a holistic care. The patients’ self‐report version of the Psychosocial Adjustment to Illness Scale (PAIS‐SR), which has been validated in Spain for use in Parkinson's disease, is designed to evaluate the psychosocial adjustment of patients. Our purpose was to validate the Spanish PAIS‐SR version for caregivers of patients with Parkinson's disease. An open, national cross‐sectional study with one point‐in‐time evaluation and retest was carried out in 450 family caregivers of patients with Parkinson's disease. Data were collected in Spain from April 2016 to September 2017. The psychometric analysis performed showed that the Spanish version of the PAIS‐SR for caregivers presents adequate indicators of reliability, internal and external validity, and is structured according to the seven‐domain model proposed by the author of the instrument.

ACS Style

Leire Ambrosio; Mª Victoria Navarta‐Sánchez; Mª Carmen Portillo; Raquel Martin‐Lanas; Miriam Recio; Mario Riverol. Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson’s Disease: Spanish validation study. Health & Social Care in the Community 2020, 29, 1030 -1040.

AMA Style

Leire Ambrosio, Mª Victoria Navarta‐Sánchez, Mª Carmen Portillo, Raquel Martin‐Lanas, Miriam Recio, Mario Riverol. Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson’s Disease: Spanish validation study. Health & Social Care in the Community. 2020; 29 (4):1030-1040.

Chicago/Turabian Style

Leire Ambrosio; Mª Victoria Navarta‐Sánchez; Mª Carmen Portillo; Raquel Martin‐Lanas; Miriam Recio; Mario Riverol. 2020. "Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson’s Disease: Spanish validation study." Health & Social Care in the Community 29, no. 4: 1030-1040.

Research article
Published: 28 April 2020 in Parkinson's Disease
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Neurodegenerative diseases such as Parkinson’s and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers’ psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson’s disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson’s disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson’s or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.

ACS Style

María Cristina Lopes Dos Santos; María Victoria Navarta-Sánchez; José Antonio Moler; Ignacio García-Lautre; Sagrario Anaut-Bravo; Mari Carmen Portillo. Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson’s Disease: A Comparative Study. Parkinson's Disease 2020, 2020, 1 -10.

AMA Style

María Cristina Lopes Dos Santos, María Victoria Navarta-Sánchez, José Antonio Moler, Ignacio García-Lautre, Sagrario Anaut-Bravo, Mari Carmen Portillo. Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson’s Disease: A Comparative Study. Parkinson's Disease. 2020; 2020 ():1-10.

Chicago/Turabian Style

María Cristina Lopes Dos Santos; María Victoria Navarta-Sánchez; José Antonio Moler; Ignacio García-Lautre; Sagrario Anaut-Bravo; Mari Carmen Portillo. 2020. "Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson’s Disease: A Comparative Study." Parkinson's Disease 2020, no. : 1-10.

Journal article
Published: 11 November 2019 in Sustainability
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: This study proposed a collaborative methodology among university students in different grades in order to find sustainable strategies that are an added value for students, teachers, and society. In daily professional practice, different professionals must develop skills to collaborate and understand each other. For that reality to be sustainable, we believe that experiences must begin in the context of higher education. Social network analysis offers a new perspective on optimizing relationships between university students. The main goal of this study was to analyze students’ behavior in their networks following an educational intervention and the association with academic performance, resilience and engagement. This was a descriptive quasi-experimental study with pre–post measures of a cooperative interdisciplinary intervention. Participants comprised 50 nursing and computer engineering students. We measured help, friendship, and negative network centrality, engagement, resilience, and academic performance. No significant differences were observed between pre–post-intervention centrality measures in the negative network. However, the help and friendship networks presented statistically significant differences between inDegreeN, OutDegreeN and EigenvectorN on the one hand, and resilience and engagement—but not academic performance—on the other. Academic performance was solely associated with the team to which participants belonged. Cooperative interdisciplinary learning increased the number of ties and levels of prestige and influence among classmates. Further research is required in order to determine the influence of engagement and resilience on academic performance and the role of negative networks in network formation in education. This study provides important information for proposals on sustainable assessments in the field of higher education.

ACS Style

Pilar Marqués-Sánchez; Isaías García-Rodríguez; José Alberto Benítez-Andrades; Mari Carmen Portillo; Javier Pérez-Paniagua; María Mercedes Reguera-García. A Cooperative Interdisciplinary Task Intervention with Undergraduate Nursing and Computer Engineering Students. Sustainability 2019, 11, 6325 .

AMA Style

Pilar Marqués-Sánchez, Isaías García-Rodríguez, José Alberto Benítez-Andrades, Mari Carmen Portillo, Javier Pérez-Paniagua, María Mercedes Reguera-García. A Cooperative Interdisciplinary Task Intervention with Undergraduate Nursing and Computer Engineering Students. Sustainability. 2019; 11 (22):6325.

Chicago/Turabian Style

Pilar Marqués-Sánchez; Isaías García-Rodríguez; José Alberto Benítez-Andrades; Mari Carmen Portillo; Javier Pérez-Paniagua; María Mercedes Reguera-García. 2019. "A Cooperative Interdisciplinary Task Intervention with Undergraduate Nursing and Computer Engineering Students." Sustainability 11, no. 22: 6325.

Review
Published: 28 August 2019 in BMC Public Health
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Obesity is a key risk factor for developing a long-term condition and a leading cause of mortality globally. The limited evidence associated with interventions that currently target obesity-related behaviours demand new approaches to tackle this problem. Given the evidence that social ties are implicated in the gaining and reduction of weight, the use of social networks in interventions is potentially a novel and useful means of tackling this health issue. There is a specific gap in the literature regarding what and how social network properties and processes together with environmental and individual factors influence the adoption of positive and negative obesity-related behaviours in adults. To address this gap in developing an integrated and holistic conceptual approach, a critical interpretative synthesis was undertaken following a line of argument synthesis as an analytical strategy. Twenty-four studies were included. The data-driven themes meso-micro network processes, contextual and individual factors, and types of ties and properties were identified individually as components and causes of different health scenarios. Nevertheless, these drivers do not act on their own. As a consequence, developing multi-agent coalitions considering cross-level influences between the data-driven themes are two mechanisms that are created to understand more in-depth how social networks and the environment influence the adoption of obesity-related behaviours. These two new constructs point to a dynamic multilevel set of influences between multiple constructs, developing scenarios where positive and negative health results are identified. This critical interpretative synthesis offers a new means of exploring the application of social network properties and mechanisms in the 'obesity' field. The synthesizing argument created during the analysis process might be considered by health policy-makers, who might need to contemplate the wider open system of socially connected individuals and harness these forces to design new interventions where social networks and other contextual and individual factors operate together in a complex multilevel environment influencing obesity-related behaviours and practices.

ACS Style

Nestor Serrano Fuentes; Anne Rogers; Mari Carmen Portillo. Social network influences and the adoption of obesity-related behaviours in adults: a critical interpretative synthesis review. BMC Public Health 2019, 19, 1178 -20.

AMA Style

Nestor Serrano Fuentes, Anne Rogers, Mari Carmen Portillo. Social network influences and the adoption of obesity-related behaviours in adults: a critical interpretative synthesis review. BMC Public Health. 2019; 19 (1):1178-20.

Chicago/Turabian Style

Nestor Serrano Fuentes; Anne Rogers; Mari Carmen Portillo. 2019. "Social network influences and the adoption of obesity-related behaviours in adults: a critical interpretative synthesis review." BMC Public Health 19, no. 1: 1178-20.

Research article
Published: 01 July 2019 in Nursing Open
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To report the cross-cultural adaptation and pilot study of the ongoing validation of the Spanish version of the Psychosocial Adjustment to Illness Scale with carers of people with Parkinson's disease. Cross-cultural adaptation and pilot study with a cross-sectional validation design of the Spanish version of the Psychosocial Adjustment to Illness Scale - Carers. Twenty-one carers of people with Parkinson's disease from a Primary Care practice in Spain were recruited and completed the PAIS-Carers, the SF-36 Health Survey, the Brief COPE Inventory and an assessment form. SPSS 23.0 was used to determine viability/acceptability and preliminary aspects of internal consistency of the instrument. Five of the seven domains presented floor effect (71.42%), and only one presented ceiling effect (14.28%). The internal consistency of the scale and domains showed acceptable values (over 0.7). The content validity of the Spanish version seemed satisfactory with positive comments in general from participants.

ACS Style

Mari Carmen Portillo; Leire Ambrosio; Raquel Martin-Lanas; M V Navarta-Sánchez; Meugenia Ursua Sesma; Mario Riverol Fernández. A pilot study on the Spanish version of the Psychosocial Adjustment to Illness Scale (PAIS-SR) with carers of people with Parkinson's disease. Nursing Open 2019, 6, 1262 -1268.

AMA Style

Mari Carmen Portillo, Leire Ambrosio, Raquel Martin-Lanas, M V Navarta-Sánchez, Meugenia Ursua Sesma, Mario Riverol Fernández. A pilot study on the Spanish version of the Psychosocial Adjustment to Illness Scale (PAIS-SR) with carers of people with Parkinson's disease. Nursing Open. 2019; 6 (3):1262-1268.

Chicago/Turabian Style

Mari Carmen Portillo; Leire Ambrosio; Raquel Martin-Lanas; M V Navarta-Sánchez; Meugenia Ursua Sesma; Mario Riverol Fernández. 2019. "A pilot study on the Spanish version of the Psychosocial Adjustment to Illness Scale (PAIS-SR) with carers of people with Parkinson's disease." Nursing Open 6, no. 3: 1262-1268.

Multicenter study
Published: 02 April 2019 in Journal of Clinical Nursing
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To identify the personal- and disease-related factors that are associated with living with Parkinson's disease. Living with Parkinson's disease affects the physical, psychological, social and spiritual areas of the person. Health professionals need to know which factors influence the daily living with Parkinson's disease, in order to facilitate a positive living. A multicentre cross-sectional study. A total of 324 patients with Parkinson's disease diagnoses were included in the study through a consecutive case sampling. Data were collected from January-June 2015, in specialised units of movement disorders of public and private and community centres, from Spain, Argentina, Mexico, Ecuador and Cuba. Nine measures were applied to evaluate personal-related factors (age, gender, psychosocial function, satisfaction with life, social support, home economical situation) and Parkinson's disease-related factors (duration of disease, motor symptoms and non-motor symptoms). The STROBE checklist was used to ensure quality reporting during the study (see File S1). Multiple linear regression analysis was carried out. Results indicated that social support, followed by satisfaction with life and home economical situation are the only three factors that significantly influence in living with Parkinson's disease. The rest of the factors analysed did not present significant influence in the daily living with this neurodegenerative disease. This study highlights the necessity to put more emphasis on the person and his/her daily living with the condition and less on symptoms and treatment. Health professionals need to develop person-centred interventions that also deal with other elements of the experience of living with a long-term condition like Parkinson's disease. Interventions to foster positive living with Parkinson's disease in clinical practice should integrate strategies to tackle and prevent loneliness and interagency elements to increase community resources and systems of support.

ACS Style

Leire Ambrosio; Mari Carmen Portillo; Carmen Rodriguez‐Blazquez; Jose Manuel Rojo; Pablo Martinez‐Martin; Mayela Rodriguez Violante; Juan Carlos Martinez Castrillo; Victor Campos Arillo; Nelida Susana Garretto; Tomoko Arakaki; Marcos Serrano-Dueñas; Mario Alvarez; EC‐PC Validation Group. Influencing factors when living with Parkinson’s disease: A cross‐sectional study. Journal of Clinical Nursing 2019, 28, 3168 -3176.

AMA Style

Leire Ambrosio, Mari Carmen Portillo, Carmen Rodriguez‐Blazquez, Jose Manuel Rojo, Pablo Martinez‐Martin, Mayela Rodriguez Violante, Juan Carlos Martinez Castrillo, Victor Campos Arillo, Nelida Susana Garretto, Tomoko Arakaki, Marcos Serrano-Dueñas, Mario Alvarez, EC‐PC Validation Group. Influencing factors when living with Parkinson’s disease: A cross‐sectional study. Journal of Clinical Nursing. 2019; 28 (17-18):3168-3176.

Chicago/Turabian Style

Leire Ambrosio; Mari Carmen Portillo; Carmen Rodriguez‐Blazquez; Jose Manuel Rojo; Pablo Martinez‐Martin; Mayela Rodriguez Violante; Juan Carlos Martinez Castrillo; Victor Campos Arillo; Nelida Susana Garretto; Tomoko Arakaki; Marcos Serrano-Dueñas; Mario Alvarez; EC‐PC Validation Group. 2019. "Influencing factors when living with Parkinson’s disease: A cross‐sectional study." Journal of Clinical Nursing 28, no. 17-18: 3168-3176.

Journal article
Published: 01 November 2018 in Revista Científica de la Sociedad de Enfermería Neurológica (English ed.)
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ACS Style

M. Victoria Navarta-Sánchez; Mario Riverol; M. Eugenia Ursúa; Leire Ambrosio; Juana M. Senosiain; Mari Carmen Portillo. Psychoeducational intervention for people with Parkinson's disease and family/carers: Preliminary results at baseline time. Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) 2018, 49, 1 .

AMA Style

M. Victoria Navarta-Sánchez, Mario Riverol, M. Eugenia Ursúa, Leire Ambrosio, Juana M. Senosiain, Mari Carmen Portillo. Psychoeducational intervention for people with Parkinson's disease and family/carers: Preliminary results at baseline time. Revista Científica de la Sociedad de Enfermería Neurológica (English ed.). 2018; 49 ():1.

Chicago/Turabian Style

M. Victoria Navarta-Sánchez; Mario Riverol; M. Eugenia Ursúa; Leire Ambrosio; Juana M. Senosiain; Mari Carmen Portillo. 2018. "Psychoeducational intervention for people with Parkinson's disease and family/carers: Preliminary results at baseline time." Revista Científica de la Sociedad de Enfermería Neurológica (English ed.) 49, no. : 1.

Journal article
Published: 03 October 2018 in Revista Científica de la Sociedad Española de Enfermería Neurológica
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La adaptación psicosocial influye en la calidad de vida del paciente con enfermedad de Parkinson (EP) y de su familiar/cuidador. Sin embargo, desde la práctica clínica generalmente no se aborda. Evaluar habilidades de afrontamiento, adaptación psicosocial y calidad de vida, en tiempo basal, en pacientes con EP y familiares/cuidadores de un cuasiexperimento. Estudio cuasiexperimental realizado en centros de Atención Primaria que evalúa el impacto de una intervención psicoeducativa en comparación con una intervención únicamente informativa. La muestra está constituida por 80 pacientes con EP y 80 familiares/cuidadores, distribuidos en un grupo control y un grupo experimental. En la recogida de datos se emplea la escala de adaptación psicosocial PAIS-SR, la escala de afrontamiento Brief COPE y las escalas de calidad de vida PDQ-39 y SQLC. En el análisis de datos sociodemográficos y t de Student se utiliza SPSS 23.0. Los pacientes y familiares/cuidadores del grupo control y el grupo experimental presentaron una afectación leve de su calidad de vida y algunas dificultades en su adaptación psicosocial. Ambos grupos utilizaban las habilidades de afrontamiento con una frecuencia baja-media. La aceptación fue la habilidad de afrontamiento más utilizada tanto por los pacientes como por sus familiares/cuidadores. No se identificaron diferencias estadísticamente significativas entre el grupo control y el experimental. En los pacientes con EP y en sus familiares/cuidadores se observa un impacto a nivel de la calidad de vida y la adaptación a la enfermedad, que podría ser abordado con intervenciones psicoeducativas centradas en desarrollar su capacidad de afrontamiento. Psychosocial adjustment affects the quality of life of patients with Parkinson's disease (PD) and his/her family/carers. However, this is not usually addressed in clinical practice. To evaluate coping skills, psychosocial adjustment and quality of life of patients with PD and their family/carers from a quasiexperiment at baseline time. Quasi-experimental study carried out in Primary Care centres to evaluate the impact of a psychoeducational intervention in contrast with an informative intervention. The sample comprised 80 patients with PD and 80 family carers, divided into a control group and an experimental group. The psychosocial adjustment scale PAIS-SR, the coping scale Brief COPE and the quality of life scales PDQ-39 and SQLC were used in the data collection. The analysis of sociodemographic data and Student's t tests was performed using SPSS 23.0. The patients and family/carers from the control group and the experimental group noticed a mild impairment in their quality of life and some difficulties in their psychosocial adjustment to illness. Both groups used coping skills with a medium-low frequency. Acceptance was the most used coping skill by patients and family/carers. No statistically significant differences were found between the control group and the...

ACS Style

M. Victoria Navarta-Sánchez; Mario Riverol; M. Eugenia Ursúa; Leire Ambrosio; Juana M. Senosiain; Mari Carmen Portillo. Intervención psicoeducativa para personas con enfermedad de Parkinson y familiares/cuidadores: resultados preliminares de la medición basal. Revista Científica de la Sociedad Española de Enfermería Neurológica 2018, 49, 16 -22.

AMA Style

M. Victoria Navarta-Sánchez, Mario Riverol, M. Eugenia Ursúa, Leire Ambrosio, Juana M. Senosiain, Mari Carmen Portillo. Intervención psicoeducativa para personas con enfermedad de Parkinson y familiares/cuidadores: resultados preliminares de la medición basal. Revista Científica de la Sociedad Española de Enfermería Neurológica. 2018; 49 ():16-22.

Chicago/Turabian Style

M. Victoria Navarta-Sánchez; Mario Riverol; M. Eugenia Ursúa; Leire Ambrosio; Juana M. Senosiain; Mari Carmen Portillo. 2018. "Intervención psicoeducativa para personas con enfermedad de Parkinson y familiares/cuidadores: resultados preliminares de la medición basal." Revista Científica de la Sociedad Española de Enfermería Neurológica 49, no. : 16-22.

Journal article
Published: 01 July 2018 in Enfermería Clínica
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Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice.

ACS Style

Leire Ambrosio; Mari Carmen Portillo. Instrumentos para valorar la convivencia del paciente con un proceso crónico: una revisión sistemática. Enfermería Clínica 2018, 28, 220 -229.

AMA Style

Leire Ambrosio, Mari Carmen Portillo. Instrumentos para valorar la convivencia del paciente con un proceso crónico: una revisión sistemática. Enfermería Clínica. 2018; 28 (4):220-229.

Chicago/Turabian Style

Leire Ambrosio; Mari Carmen Portillo. 2018. "Instrumentos para valorar la convivencia del paciente con un proceso crónico: una revisión sistemática." Enfermería Clínica 28, no. 4: 220-229.

Study protocol
Published: 05 April 2018 in BMC Family Practice
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Parkinson’s disease progressively limits patients at different levels and as a result family members play a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting. This quasi-experimental study with control group and mixed methods was designed to evaluate a multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will receive the ReNACE psychoeducational intervention. The control group will be given a general educational programme. The study will be carried out in six community-based health centres. The results obtained from the two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ-39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some patients and family carers who will have received the ReNACE psychoeducational intervention and also with the healthcare professionals involved in its development. An important gap exists in the knowledge and application of interventions with a psychosocial approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for patients and family carers, and also in other long-term conditions. NCT03129425 (ClinicalTrials.gov). Retrospectively registered on April 26, 2017.

ACS Style

M V Navarta-Sánchez; M. E. Ursua; M. Riverol Fernández; L. Ambrosio; M. Medina; S. Díaz De Cerio; M. J. Álvarez; J. M. Senosiain; A. Gorraiz; N. Caparrós; S. Anaut; R. Martín-Lanas; M. Recio; M. C. Portillo. Implementation of a multidisciplinary psychoeducational intervention for Parkinson’s disease patients and carers in the community: study protocol. BMC Family Practice 2018, 19, 1 -11.

AMA Style

M V Navarta-Sánchez, M. E. Ursua, M. Riverol Fernández, L. Ambrosio, M. Medina, S. Díaz De Cerio, M. J. Álvarez, J. M. Senosiain, A. Gorraiz, N. Caparrós, S. Anaut, R. Martín-Lanas, M. Recio, M. C. Portillo. Implementation of a multidisciplinary psychoeducational intervention for Parkinson’s disease patients and carers in the community: study protocol. BMC Family Practice. 2018; 19 (1):1-11.

Chicago/Turabian Style

M V Navarta-Sánchez; M. E. Ursua; M. Riverol Fernández; L. Ambrosio; M. Medina; S. Díaz De Cerio; M. J. Álvarez; J. M. Senosiain; A. Gorraiz; N. Caparrós; S. Anaut; R. Martín-Lanas; M. Recio; M. C. Portillo. 2018. "Implementation of a multidisciplinary psychoeducational intervention for Parkinson’s disease patients and carers in the community: study protocol." BMC Family Practice 19, no. 1: 1-11.

Original research
Published: 11 May 2017 in Journal of Advanced Nursing
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Aims The aim of this study were: (1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; (2) To suggest the components of an intervention focused on enhancing their coping with the disease. Background Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills. Design A sequential explanatory mixed methods study was carried out. Findings from the qualitative phase are presented. Methods Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers. Findings The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed. Conclusion Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long‐term conditions.

ACS Style

M V Navarta-Sánchez; Neus Caparrós; Mario Riverol Fernández; Sara Díaz De Cerio Ayesa; M. Eugenia Ursúa Sesma; Mari Carmen Portillo. Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study. Journal of Advanced Nursing 2017, 73, 2609 -2621.

AMA Style

M V Navarta-Sánchez, Neus Caparrós, Mario Riverol Fernández, Sara Díaz De Cerio Ayesa, M. Eugenia Ursúa Sesma, Mari Carmen Portillo. Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study. Journal of Advanced Nursing. 2017; 73 (11):2609-2621.

Chicago/Turabian Style

M V Navarta-Sánchez; Neus Caparrós; Mario Riverol Fernández; Sara Díaz De Cerio Ayesa; M. Eugenia Ursúa Sesma; Mari Carmen Portillo. 2017. "Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study." Journal of Advanced Nursing 73, no. 11: 2609-2621.

Journal article
Published: 01 April 2017 in Atención Primaria
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ACS Style

María Victoria Navarta-Sánchez; Neus Caparrós; María Eugenia Ursúa Sesma; Sara Díaz De Cerio Ayesa; Mario Riverol; Mari Carmen Portillo. Estrategias psicosociales para fortalecer el afrontamiento de la enfermedad de Parkinson: perspectiva de pacientes, familiares y profesionales sociosanitarios. Atención Primaria 2017, 49, 214 -223.

AMA Style

María Victoria Navarta-Sánchez, Neus Caparrós, María Eugenia Ursúa Sesma, Sara Díaz De Cerio Ayesa, Mario Riverol, Mari Carmen Portillo. Estrategias psicosociales para fortalecer el afrontamiento de la enfermedad de Parkinson: perspectiva de pacientes, familiares y profesionales sociosanitarios. Atención Primaria. 2017; 49 (4):214-223.

Chicago/Turabian Style

María Victoria Navarta-Sánchez; Neus Caparrós; María Eugenia Ursúa Sesma; Sara Díaz De Cerio Ayesa; Mario Riverol; Mari Carmen Portillo. 2017. "Estrategias psicosociales para fortalecer el afrontamiento de la enfermedad de Parkinson: perspectiva de pacientes, familiares y profesionales sociosanitarios." Atención Primaria 49, no. 4: 214-223.

Journal article
Published: 03 February 2017 in International Journal of Nursing Studies
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Diabetes has become a challenging health priority globally. Given the tensions of financially burdened health systems in Europe the mobilisation of community resources like voluntary organisations and community groups is seen as a health policy strategy to sustain the management of long-term conditions like diabetes. However, little is known about how this is happening in practice in Europe. To explore diabetes self-management interventions undertaken or promoted by voluntary organisations and community groups in Europe; and describe the types of working relationships between these organisations, European health systems and users when implementing diabetes self-management programmes in different areas. A mixed method study (survey/qualitative interviews) was undertaken. This research formed part of a European project (7th Framework programme of the European Commission) exploring the link between resources, like community organisations, and peoples’ capacities to manage long-term conditions. Six European countries (Bulgaria, Greece, Norway, Spain, the Netherlands and the United Kingdom) participated in the study. Three areas: deprived urban area, a relatively affluent urban area and a deprived rural area were purposefully selected. Through a purposeful sample and bottom up strategies 749 representatives of voluntary organisations and community groups were recruited from the geographical areas above. Organisations with at least three members, existing for at least one year that could provide information or other type of support directly or indirectly relevant to patients with diabetes were included. Participants completed a 15 item questionnaire for the survey (n = 749) and a voice recorded semi structured interview (n = 300). Data collection focused on the type of activities and roles developed to promote health, and relationships and communication channels between organisations, health services and users. Descriptive and comparative statistical and qualitative content analyses were used. Participants perceived they had better reach of people with health needs than health providers, filled the administration gaps left in their capacity to deal with basic diabetes practical needs, humanized care, and acted as mediators between services and communities. There were significant differences between countries in relation to the types of activities (p-value < 0.001), roles (p-value < 0.001) and funding sources (p-value < 0.001) of organisations concerning diabetes self-management. In non-affluent countries organisations tend to promote social activities twice more often. Community and voluntary organisations provide complimentary and on-going support in diabetes management. This involves a shift from focusing on the illness to also longing for social cohesion, sense of community and wellbeing in diabetes health practices and policies.

ACS Style

Mari Carmen Portillo; Anne Kennedy; Elka Todorova; Elena Regaira; Michel Wensing; Christina Foss; Christos Lionis; Ivaylo Vassilev; Valentin Goev; Anne Rogers. Interventions and working relationships of voluntary organisations for diabetes self-management: A cross-national study. International Journal of Nursing Studies 2017, 70, 58 -70.

AMA Style

Mari Carmen Portillo, Anne Kennedy, Elka Todorova, Elena Regaira, Michel Wensing, Christina Foss, Christos Lionis, Ivaylo Vassilev, Valentin Goev, Anne Rogers. Interventions and working relationships of voluntary organisations for diabetes self-management: A cross-national study. International Journal of Nursing Studies. 2017; 70 ():58-70.

Chicago/Turabian Style

Mari Carmen Portillo; Anne Kennedy; Elka Todorova; Elena Regaira; Michel Wensing; Christina Foss; Christos Lionis; Ivaylo Vassilev; Valentin Goev; Anne Rogers. 2017. "Interventions and working relationships of voluntary organisations for diabetes self-management: A cross-national study." International Journal of Nursing Studies 70, no. : 58-70.

Research article
Published: 09 July 2016 in Qualitative Health Research
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Food and diet are central aspects of diabetes self-management but the relevance of social networks for the way people are supported in their management of type 2 diabetes is often under-acknowledged. In this article, we aimed to explore the coalescences between these two phenomena among people with type 2 diabetes to increase knowledge of interactions within social network related to daily diet. The article is based on 125 qualitative interviews with individuals with type 2 diabetes from five European countries. Based on assumptions that people with chronic illnesses reshape relationships through negotiation, we analyzed negotiations of food at different levels of network. The respondents’ reflections indicate that there are complex negotiations that influence self-management and food, including support, knowledge, and relationships within families; attention and openness in social situations; and the premises and norms of society.

ACS Style

Ingrid Ruud Knutsen; I. Christina Foss; Elka Todorova; Poli Roukova; Anne Kennedy; Mari Carmen Portillo; Elena Regaira; Manuel Serrano-Gil; Christos Lionis; Agapi Angelaki; Anne Rogers. Negotiating Diet in Networks. Qualitative Health Research 2016, 27, 299 -310.

AMA Style

Ingrid Ruud Knutsen, I. Christina Foss, Elka Todorova, Poli Roukova, Anne Kennedy, Mari Carmen Portillo, Elena Regaira, Manuel Serrano-Gil, Christos Lionis, Agapi Angelaki, Anne Rogers. Negotiating Diet in Networks. Qualitative Health Research. 2016; 27 (3):299-310.

Chicago/Turabian Style

Ingrid Ruud Knutsen; I. Christina Foss; Elka Todorova; Poli Roukova; Anne Kennedy; Mari Carmen Portillo; Elena Regaira; Manuel Serrano-Gil; Christos Lionis; Agapi Angelaki; Anne Rogers. 2016. "Negotiating Diet in Networks." Qualitative Health Research 27, no. 3: 299-310.