The role of ‘social support’ in the experience of fibromyalgia - narratives from South Africa

Cooper, Silvie; Gilbert, Leah

doi:10.1111/hsc.12403

Cited by 20 publications

(18 citation statements)

References 56 publications

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“…First, social support was identified as a positive lifestyle change for people with fibromyalgia, in the form of receiving help from their families. Other research has shown that social support is an important mechanism for coping with the experience of fibromyalgia [ 55 ], and it is considered a mediator of the relationship between role strains and marital satisfaction in husbands of fibromyalgia women [ 56 ]. Second, the fibromyalgia patients referred to the different strategies for pain and fatigue management used by them, such as physical exercise, using a coloring book, etc.…”

Section: Discussionmentioning

confidence: 99%

The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study

Velasco-Furlong

Gutiérrez

Mateos-Pintado

et al. 2020

IJERPH

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Although fatigue usually goes unnoticed, it is a symptom that poses great challenges to patients with fibromyalgia and is a strong limitation. The aim of this study is to identify and describe the variables involved in fatigue in nine different situations of the Goal Pursuit Questionnaire (GPQ) that may occur in the daily lives of women with fibromyalgia, according to an ABC (Antecedents–Behaviors–Consequences) model. This study followed a qualitative descriptive research method and a deductive–inductive hybrid approach based on a phenomenological paradigm. Twenty-six women with fibromyalgia participated in focus group discussions between February and March of 2018. Thematic content analysis was carried out from transcribed verbatim interviews. We identified nine major themes that emerged from the participants’ conversations: self-imposed duties, muscle fatigue, overwhelming feeling of tiredness, difficulty thinking, difficulty concentrating, negative emotions, lifestyle changes, affected everyday activities, and lack of motivation for daily activities and social interactions. We conclude that the ABC model allowed certain elements to emerge regarding the fatigue experience, highlighting its importance as a symptom in fibromyalgia. This additional analysis of the ABC model showed that fatigue can be described through the 4 U’s Rule, which is integrated by these four adjectives: (1) Unpredictable, (2) Uncontrollable, (3) Unseen, and (4) Unintelligible. Identifying these characteristics can contribute to a better understanding of fibromyalgia in addition to better treatment for these patients.

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Section: Discussionmentioning

confidence: 99%

The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study

Velasco-Furlong

Gutiérrez

Mateos-Pintado

et al. 2020

IJERPH

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“…The status and nature of the diagnosis of fibromyalgia has a real impact on people’s abilities to make sense of their illness. It also affects their capacity to articulate their experience to others and to receive medical and social support (Barker, 2011; Cooper and Gilbert, 2016; Skuladottir and Halldorsdottir, 2011; Werner and Malterud, 2003). Gaining access to practitioners and treatments depends on the possession of a recognised diagnosis and the presence of practitioners who are accepting of that diagnosis in the health care environment and culture (Werner et al, 2003).…”

Section: Introductionmentioning

confidence: 99%

An exploratory study of the experience of fibromyalgia diagnosis in South Africa

Cooper

Gilbert

2016

Health (London)

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Within the conceptual framework of 'medically-ill-defined' conditions, this article focuses on the experiences of 'diagnosis' through a narrative analysis of fibromyalgia (a chronic musculoskeletal pain disorder) in South Africa. In-depth interviews were used to collect narratives from 15 participants. The findings show how the contested and confusing experience of fibromyalgia diagnosis can be understood, by viewing the interactions that patients have with their practitioners, families, peers and colleagues. The currency of fibromyalgia as a diagnosis and the inequalities present in the South African health care system characterise the experiences of symptom recognition, diagnosis and treatment. The analysis reveals how those living with fibromyalgia search for diagnosis, and struggle to maintain legitimacy for their experience in the complex constellation of porous symptoms that appear infrequently. The findings of this study confirm the existing evidence that shows fibromyalgia to be a challenging illness experience, which is attributed to the lack of clarity and legitimacy, and high contestation that surrounds the condition. Additionally, this study presents the ways that limited access to diagnosis and treatment for fibromyalgia in the South African context shapes this specific illness experience, and the value of using narrative approaches to gain insight into how people live with hidden and poorly understood conditions in this environment.

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“…Indeed, most health-related research on social support in South Africa has been conducted among caregivers of patients living with HIV/AIDS (e.g., Casale, Wild, Cluver, & Kuo, 2014; Kuo, Fitzgerald, Operario, & Casale, 2012; Singh, Chaudoir, Escobar, & Kalichman, 2011). Other locally conducted studies on social support have been conducted among patients with fibromyalgia (Cooper & Gilbert, 2017), type II diabetes (Ramkisson, Pillay, & Sibanda, 2017), and orthopaedic-related injuries (Maselesele & Idemudia, 2013). Even though breast cancer is the most commonly diagnosed type of cancer among women in South Africa, accounting for 21.78% of new diagnoses (South African National Cancer Registry, 2014), we were unable to find published research measuring social support among this population.…”

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confidence: 99%

“…The South African research cited above only investigated perceived social support, not received social support. In these studies, perceived social support was conceptualised in terms of sources of support (i.e., persons who provided support) (Cooper & Gilbert, 2017; Kuo et al, 2012; Ramkisson et al, 2017; Singh et al, 2011) and the availability of types of support (i.e., emotional, instrumental, informational, and appraisal support) (Casale et al, 2014). Measures used therefore assessed perceived support using these dimensions.…”

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confidence: 99%

Received and perceived support subscales of the Berlin Social Support Scales in women diagnosed with breast cancer attending the breast clinic at Tygerberg hospital: structure and correlates

Roomaney

Kagee

Knoll

2019

South African Journal of Psychology

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Research in the field of psycho-oncology in South Africa is increasing, and there is a need for validated measures that assess factors associated with cancer, such as social support. The Berlin Social Support Scales are a battery of instruments that measure various types and functions of social support. The measure was originally developed for use among adult cancer patients, and their partners but has also been used among other clinical populations and healthy adults. We investigated the psychometric properties of the English version of the perceived and received sub-scales, Berlin Social Support Scales. Our sample included South African women ( N = 201) who were diagnosed with breast cancer and receiving treatment at a public health care facility. We administered several measures, including a demographic questionnaire, the Berlin Social Support subscales, the Duke-UNC Functional Social Support Questionnaire, and The Functional Assessment of Cancer Therapy to participants. Validity and reliability analyses were conducted. Factor analysis resulted in the retention of 17 items that clustered on two factors, namely received support and perceived support. The 17-item version of the Berlin Social Support Scale demonstrated strong reliability and validity in the sample. The two subscales are quick to administer, easy to interpret, and are a reliable measure of social support among breast cancer patients in South Africa.

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The role of ‘social support’ in the experience of fibromyalgia - narratives from South Africa

Cited by 20 publications

References 56 publications

The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study

The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study

An exploratory study of the experience of fibromyalgia diagnosis in South Africa

Received and perceived support subscales of the Berlin Social Support Scales in women diagnosed with breast cancer attending the breast clinic at Tygerberg hospital: structure and correlates

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