Living well with chronic illness: How social support, loneliness and psychological appraisals relate to well-being in a population-based European sample

Maguire, Rebecca; Hanly, Paul; Maguire, Phil

doi:10.1177/1359105319883923

Cited by 28 publications

(18 citation statements)

References 38 publications

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“…In contrast, positive efficacy expectations may be more useful when self-care is possible (Fournier et al, 2002). Similar effects have been observed in other chronic illness populations, with optimism showing stronger associations with QOL in those limited by disease, compared to those who are not (Maguire et al, 2019). While our review found similar benefits for self-efficacy expectations in a range of PwMS, including those with progressive forms of the disease, examination of the broader literature implies that the benefits of fostering positive expectations may depend on individual health-related characteristics and other contextual factors.…”

Section: Negative Focssupporting

confidence: 53%

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The role of expectations and future-oriented cognitions in quality of life of people with multiple sclerosis: A systematic review

Maguire

McKeague

Kóka

et al. 2021

Multiple Sclerosis and Related Disorders

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Multiple Sclerosis (MS) is a highly variable condition characterised by uncertainty of disease course which can make formation of expectations about the future difficult. This systematic review aimed to examine associations between expectations, or Future Oriented Cognitions (FOCs), and Quality of Life (QOL) in people with MS (PwMS). Methods: Following PRISMA guidelines, literature up to October 2019 was searched using Medline, EMBASE, PsycINFO and Web of Science. Quantitative studies that investigated relationships between FOCs and QOL in PwMS (assessed using a standardised QOL assessment) were considered for inclusion. After data extraction, results were analysed using narrative synthesis, focusing on the valence of FOCs (positive, negative, unvalenced). Quality appraisal was conducted using the Mixed Methods Appraisal Tool (MMAT). All stages of the review were patient-led by a person with MS. Results: A total of 13 studies met the review inclusion criteria, with a combined sample size of 4,179. Of these studies, 11 involved measures of positive FOCs, most commonly self-efficacy, one measured a negative FOC, with one FOC unclassified. Nine studies found significant associations between QOL and self-efficacy. Although other positively valenced constructs were less frequently reported, significant associations with higher QOL were also evidenced. Conclusions: Identifying ways to foster positive FOCs, particularly self-efficacy, may have beneficial effects on QOL. More research is needed to understand the impacts of negative FOCs on QOL to determine whether these processes could be meaningfully targeted in interventions.

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Section: Negative Focssupporting

confidence: 53%

“…The focus of the review was patient-led, having been conceptualised by the first author, who has MS. The protocol was presented at the MS Frontiers Conference in July 2019 (Maguire et al, 2019).…”

Section: Methodsmentioning

confidence: 99%

The role of expectations and future-oriented cognitions in quality of life of people with multiple sclerosis: A systematic review

Maguire

McKeague

Kóka

et al. 2021

Multiple Sclerosis and Related Disorders

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“…This finding strongly indicates having an emotional social support system is important for maintaining psychological wellbeing in people living with HIV [ 8 , 11 , 15 ]. The significance of emotional social support is a well-known fact also in other chronic [ 36 ] and acute [ 37 ] health condition as well as in the general population [ 38 ].…”

Section: Discussionmentioning

confidence: 99%

Hopelessness and HIV infection: an exploratory study with a gender-specific perspective

et al. 2022

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Background An understudied psychological response to HIV-related stressors among people living with HIV is hopelessness. Hopelessness is the expectation that things will not improve and feeling helpless to change one’s current situation. The aim of this study was to assess prevalence and levels of hopelessness and its direct and indirect contributors in people living with HIV in Sweden. Methods Participants included 967 women and men from the “Living with HIV in Sweden” cross-sectional study with available data regarding hopelessness measured by the Beck Hopelessness Scale. Binary and multiple logistic regression analyses were used to determine direct and indirect factors that may contribute to feelings of hopelessness. Path analyses were used to assess the underlying structure of hopelessness. All analyses were conducted by gender. Results Almost half the participants reported moderate to severe hopelessness. There were no differences in frequency of feeling hopeless or level of hopelessness by gender or sexual orientation. Dissatisfaction with finances, dissatisfaction with physical health, and low HIV-related emotional support were found to be directly associated with hopelessness for both women and men. Although having some indirect factors in common, unemployment and HIV stigmatization, women and men had different underlying structures of hopelessness. Conclusions Our findings are important to HIV clinicians in identifying those at risk of hopelessness from a gender perspective in order to reduce preventable psychological distress among people living with HIV.

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“…With this cumulation of experiences throughout life, it is perhaps not surprising that some of our survey participants described becoming accustomed to their condition and using various coping strategies. A large population-based study identified that among those with chronic illness, optimism, and resilience appeared to be more important to those facing severe limitations to daily activities, than those who were not, suggesting that positive psychological appraisals play a key role in maintaining wellbeing when faced with debilitating illnesses [ 29 ]. Resilience can be defined as the ability to adapt one’s responses in the face of adversity and the associated stressors, and is a concept influenced by psychological, biological, and environmental factors [ 30 ].…”

Section: Discussionmentioning

confidence: 99%

Patient-Reported Complications, Symptoms, and Experiences of Living With X-Linked Hypophosphatemia Across the Life-Course

Cheung

Rylands

Williams

et al. 2021

Journal of the Endocrine Society

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Background X-linked hypophosphatemia (XLH) is a rare, genetic phosphate-wasting disease resulting in bone, muscular and dental problems, beginning in childhood and increasing in adulthood. This qualitative analysis aimed to explore patient-reported symptoms, complications and experiences of XLH over the life-course, using data from a large multinational online survey. Methods Responses to two open-ended questions from 209 adults and 86 children/adolescents (proxy report) with self-reported XLH were analyzed in eight age groups. Two researchers independently coded and analyzed the responses, using thematic analysis, with differences settled among a multi-disciplinary group. Six themes were identified, with age sub-group analysis conducted on the three most common, according to coding frequency. Results Within theme 1, ‘Clinical Signs and Symptoms of XLH’, ‘Pain’ was a dominant sub-theme across the life-course, but ‘Skeletal Pathology’ dominated the responses of children/adolescents. Within theme 2, ‘Impacts of Clinical Signs and Symptoms’, interference with ‘Physical Exertion’ and ‘Emotional Wellbeing’ (comprising depression/anxiety in adults and lack of self-esteem in children/adolescents) was reported across all ages. For theme 3, ‘Negative Treatment Experiences’, ‘Medication’ was problematic for children, with adults reporting lack of ‘Access to Appropriate Treatment’. Three further themes were identified: ‘Resilience’, ‘Positive Treatment Experiences’, and ‘Information Needs.’ Conclusion The multiple burdens imposed on people with XLH throughout their lifetime encompassed the physical, emotional and social, although the most challenging symptoms or complications differed between ages. Burden was further exacerbated by adult’s lack of access to appropriate treatment, illustrating the need for age-appropriate multidisciplinary care.

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Living well with chronic illness: How social support, loneliness and psychological appraisals relate to well-being in a population-based European sample

Cited by 28 publications

References 38 publications

The role of expectations and future-oriented cognitions in quality of life of people with multiple sclerosis: A systematic review

The role of expectations and future-oriented cognitions in quality of life of people with multiple sclerosis: A systematic review

Hopelessness and HIV infection: an exploratory study with a gender-specific perspective

Patient-Reported Complications, Symptoms, and Experiences of Living With X-Linked Hypophosphatemia Across the Life-Course

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