Partners’ representations of diabetes as mediators between patients’ representations and adherence to self-care behaviors, in type 2 diabetes

Pereira, M. Graça; Pedras, Susana; Machado, José Cunha; Ferreira, Gabriela

doi:10.1080/13548506.2015.1118517

Cited by 11 publications

(12 citation statements)

References 17 publications

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“…Overt encouragement not to protect could also be linked to conflict between the patient's medical model of XP and the 'minor condition model' of the peer group. Differences in perceptions of LTCs between patients and close relatives, or significant others, have been found to have deleterious effects in other conditions which require multiple self-care behaviours (Pereira, Pedras, Machado, & Ferreira, 2016;Searle, Norman, Thompson, & Vedhara, 2007). Our findings reiterate early work by Revenson, Schiaffino, Majerovitz, and Gibofsky (1991) highlighting the existence of 'problematic social support' and contribute to understanding why a negative social environment is especially toxic (Helgeson & Zajdel, 2017).…”

Section: Discussionsupporting

confidence: 68%

Forms, interactions, and responses to social support: A qualitative study of support and adherence to photoprotection amongst patients with Xeroderma Pigmentosum

Walburn

Anderson

Morgan

2019

British J Health Psychol

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Objectives Social support influences adherence to treatment in chronic illness, but there is uncertainty about its facilitators and constraints. This study explored the forms, processes, and responses associated with mobilization of informal support across three life contexts amongst patients with Xeroderma Pigmentosum (XP), a condition requiring rigorous photoprotection to reduce cancer risks. Design Qualitative interview study. Methods A total of 25 adults with XP participated in semi‐structured interviews conducted face to face. An inductive thematic analysis was applied using a framework approach. Results Practical support, involving both assistance with recommended photoprotection and adjusting daily activities to reduce exposure, was the key form of support provided by family and friends. However, responses to this support differed with two groups identified based on the relative priority given to photoprotection in daily life and processes of disclosure. For ‘positive responders’, support aligned with their own priorities to photoprotect, conveyed feelings of being cared‐for and was facilitated by talking openly. In contrast, for ‘negative responders’ support conflicted with their priority of living ‘normally’ and their limited disclosure hindered receipt of helpful support in personal, clinic, and work interactions. Fears of workplace stigma also reduced disclosure amongst participants open in other contexts. Conclusions Practical support conveyed psychosocial support with positive effects on adherence. This suggests the traditional separation into practical and emotional support is overly simplistic, with measures potentially missing important aspects. Interactional processes contribute to the effects of support, which can be addressed by targeting disclosure, stigma, and other barriers at individual and organizational levels. What is already known on this subject? Social support can be both a facilitator and a hindrance to treatment adherence. Practical support is identified as the most important form of support in the context of adherence. The processes of support underpinning its relationship to adherence are unclear. What does this study add? Variations in the provision and impacts of support are influenced by participants’ disclosure and attitudes to photoprotection, with two key groups comprising ‘positive responders’ and ‘negative responders’. The influence of emotional support on adherence may be underestimated through neglect of the ways in which practical support often conveys feelings of being valued and cared‐for. Barriers to mobilizing effective adherence support extends across life spheres, with fears of stigma and discrimination in work settings highlighting the need to intervene at individual and organizational levels.

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Section: Discussionsupporting

confidence: 68%

Forms, interactions, and responses to social support: A qualitative study of support and adherence to photoprotection amongst patients with Xeroderma Pigmentosum

Walburn

Anderson

Morgan

2019

British J Health Psychol

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“…The impacts on men may have a bearing on the health and well-being of men and may in turn impair relationships and the ability of men to fully support their partners. For most people with chronic conditions in relationships, the behaviours and beliefs of partners are of considerable importance in how the condition is experienced and managed ( Henry et al , 2013 ; Pereira et al , 2016 ).…”

Section: Discussionmentioning

confidence: 99%

A qualitative study of the impact of endometriosis on male partners

et al. 2017

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STUDY QUESTIONWhat is the impact of endometriosis on male partners of women with the condition?SUMMARY ANSWEREndometriosis significantly impacts men across several life domains and can negatively impact emotional well-being.WHAT IS KNOWN ALREADYEndometriosis has been shown to negatively impact women's quality of life and may strain intimate relationships. Little is known about the impact on male partners.STUDY DESIGN, SIZE, DURATIONThe ENDOPART study was a cross-sectional, qualitative study of 22 women with endometriosis and their male partners (n = 44) in the UK (2012–2013).PARTICIPANTS/MATERIALS, SETTING, METHODSInclusion criteria: laparoscopic diagnosis of endometriosis; the presence of symptoms for at least a year; partners living together. Data were collected via face to face, semi structured interviews with partners interviewed separately. Data were analysed thematically, assisted by NVivo 10.MAIN RESULTS AND THE ROLE OF CHANCEMen reported that endometriosis affected many life domains including sex and intimacy, planning for and having children, working lives and household income. It also required them to take on additional support tasks and roles. Endometriosis also had an impact on men's emotions, with responses including helplessness, frustration, worry and anger. The absence of professional or wider societal recognition of the impact on male partners, and a lack of support available to men, results in male partners having a marginalized status in endometriosis care.LIMITATIONS REASONS FOR CAUTIONSelf-selection of participants may have resulted in a sample representing those with more severe symptoms. Couples included are in effect ‘survivors’ in relationship terms, therefore, findings may underestimate the contribution of endometriosis to relationship breakdown.WIDER IMPLICATIONS OF THE FINDINGSThe study extends knowledge about the impact of endometriosis on relationships, which thus far has been drawn largely from studies with women, by providing new insights about how this condition affects male partners. Healthcare practitioners need to take a more couple-centred, biopsychosocial approach toward the treatment of endometriosis, inclusive of partners and relationship issues. The findings demonstrate a need for information and support resources aimed at partners and couples.STUDY FUNDING/COMPETING INTEREST(S)This study was funded by the Economic and Social Research Council (reference ES/J003662/1). The authors have no conflicts of interest.

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“…It is a generic tool, which can be administered regardless of the disease and the prescribed drug. It has been validated so far in different clinical settings, namely statin therapy [15], rheumatoid arthritis [16], asthma [17], psychosis [18], and has been used for assessing adherence in many clinical studies worldwide [19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37].…”

Section: Introductionmentioning

confidence: 99%

Translation and initial validation of the Medication Adherence Report Scale (MARS) in Italian patients with Crohn’s Disease

Scribano

Caprioli

Michielan

et al. 2019

Digestive and Liver Disease

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The MARS-5 (Medication Adherence Report Scale) was developed in English. The aim of this project was to analyse the MARS-5I (© Prof Rob Horne) psychometric properties and to identify whether its Italian translation is suitable for assessing medication adherence in Crohn Disease (CD) Italian patients. The MARS was translated and linguistically validated in Italian. The MARS-5I was used for evaluating medication adherence in the SOLE study, conducted in Italy on 552 subjects with CD. In order to unbias the questionnaire results from the effects of treatment change and/or effectiveness, the analyses were performed on the 277 patients whose disease activity remained stable, selected among the 371 patients who maintained the same treatment between two consecutive visits. Internal consistency was high (Cronbach's alpha of 0.86). Pearson's correlation coefficient was 0.50 (p < 0.001) and 0.86 (p < 0.001outliers removed), indicating satisfactory test-retest. MARS 5I scores were not correlated with Treatment Satisfaction Questionnaire for Medication but a small and statistically significant correlation was shown with physician-evaluated medication adherence, indicating convergent validity. MARS-5I, the Italian translation of the English MARS, showed satisfactory internal consistency and test-retest, and a low but statistically significant convergent validity. We confirmed the utility of this tool in patients with CD.

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Partners’ representations of diabetes as mediators between patients’ representations and adherence to self-care behaviors, in type 2 diabetes

Cited by 11 publications

References 17 publications

Forms, interactions, and responses to social support: A qualitative study of support and adherence to photoprotection amongst patients with Xeroderma Pigmentosum

Forms, interactions, and responses to social support: A qualitative study of support and adherence to photoprotection amongst patients with Xeroderma Pigmentosum

A qualitative study of the impact of endometriosis on male partners

Translation and initial validation of the Medication Adherence Report Scale (MARS) in Italian patients with Crohn’s Disease

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