Oscillating between hope and despair — a qualitative study

Sällfors, Christina; Fasth, Anders; Hallberg, Lillemor R.‐M.

doi:10.1046/j.1365-2214.2002.00300.x

Cited by 69 publications

(86 citation statements)

References 20 publications

(26 reference statements)

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“…Ungerer and colleagues (1988) have pointed out the social consequences of arthritis for teenagers, compared with younger children. The results of our earlier studies clarify that those children's (6Á17 years) interpersonal relations are negatively affected by pain associated with chronic arthritis (Sällfors et al, 2001(Sällfors et al, , 2002. In addition to increasing developmental challenges, pain and illness create additional challenges related to coping for teenage girls with chronic arthritis.…”

Section: Discussionmentioning

confidence: 92%

Fitting into the prevailing teenage culture: A grounded theory on female adolescents with chronic arthritis

Sällfors

Hallberg

2009

International Journal of Qualitative Studies on Health and Well

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The aim of this study was to deepen the understanding of female adolescents' daily living with chronic arthritis. Taperecorded open interviews were conducted once with six teenage girls (14Á17 years), who also wrote diaries for a 12-month period. In addition, 12 interviews of female adolescents diagnosed with chronic arthritis selected from another sample in an earlier study by the authors were included in the data. The Grounded Theory (GT) method was used for analysing the diaries and the transcribed interviews. A core category, labelled Fitting into the prevailing teenage culture, and four related categories labelled (1) mastering a body in pain; (2) living one day at time; (3) using social support; and (4) fighting for health emerged. The categories formed a substantive theory illuminating living with chronic arthritis during adolescence. The theory explains and provides a deeper understanding of the main concern of these female adolescents and their strategies in managing their situation.

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Section: Discussionmentioning

confidence: 92%

Fitting into the prevailing teenage culture: A grounded theory on female adolescents with chronic arthritis

Sällfors

Hallberg

2009

International Journal of Qualitative Studies on Health and Well

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“…The results indicate that there is variation in pain and, therefore, the children could live like their healthy peers one day, only to realize another day that "the pain had taken over." They expressed a sense of frustration, powerlessness, and uncertainty about the future (26 …”

Section: Invisible Painmentioning

confidence: 99%

“…. because I didn't have a bandage or anything" (26). "People don't understand that one day you can be okay and the other day, that you can't.…”

Section: Invisible Painmentioning

confidence: 99%

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Children's experiences of living with juvenile idiopathic arthritis: A thematic synthesis of qualitative studies

Tong¹,

Jones

Craig³

et al. 2012

Arthritis Care & Research

133

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Objective. To describe the experiences and perspectives of children and adolescents living with juvenile idiopathic arthritis (JIA). Methods. We conducted a systematic review of qualitative studies that explored the experiences of children living with JIA. We searched electronic databases (to week 2 of July 2011) and reference lists of relevant articles. Results. Twenty-seven studies that reported the experiences of more than 542 participants were included. Six major themes were identified: aversion to being different (unrelenting and unpredictable pain, disablement, internal disfigurement, differential treatment, and forced dependency on others); striving for normality (preserving social identity, resourcefulness, sense of community, focus on remission, and mastery over body and pain); stigma and misunderstanding (trivialization of disease, invisible pain, and discrimination); suspension in uncertainty (control versus powerlessness, hope versus disappointment); managing treatment (benefits of taking medicines, respect and involvement in health care, and motivation for physical therapy); and desire for knowledge (medical treatment and advances, lifestyle management). Conclusion. JIA disrupts a child's sense of normality and impairs his or her capacity for social participation. Children with JIA have a sense of being misunderstood and stigmatized, and they feel perpetually caught between having hope and control over their bodies and overwhelming pain and despair. To increase their confidence, the ability to manage pain, and their resourcefulness for self-management, children need ongoing information about treatments and lifestyle management, strong social support, community advocacy, and active involvement in their own health decision making.

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“…Sallfors, Fasth and Hallberg (2002) spoke to children living with juvenile chronic arthritis and found that children did not perceive that health professionals and school staff trusted their reporting of their illness experience. The children expressed readiness to participate in the relationship and felt able to ask questions however they did not often feel supported in doing so.…”

Section: A Child's Viewmentioning

confidence: 99%

Within the web: the family–practitioner relationship in the context of chronic childhood illness

Dickinson¹,

Smythe²,

Spence

2006

J Child Health Care

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This hermeneutic phenomenological study explores the relationship between health professionals and families who have a child with a chronic illness. Study participants included 10 family groups who had a child with a chronic illness and 12 practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy. Data were collected by narrative audiotaped interviewing. The results of this study revealed that chronic childhood illness ‘throws' families and practitioners together into a web of relationships, which must work for the sake of the child. However, children are usually excluded from the relationship. To understand and manage the child's illness, practitioners and families ‘go around’ and act ‘in-between’ relationships. While the quality of the relationship from the family perspective is not essential, relationships are more successful when practitioners recognize the uniqueness of each family web. The nature of the relationship is often simple, yet it coexists with complexity.

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Oscillating between hope and despair — a qualitative study

Cited by 69 publications

References 20 publications

Fitting into the prevailing teenage culture: A grounded theory on female adolescents with chronic arthritis

Fitting into the prevailing teenage culture: A grounded theory on female adolescents with chronic arthritis

Children's experiences of living with juvenile idiopathic arthritis: A thematic synthesis of qualitative studies

Within the web: the family–practitioner relationship in the context of chronic childhood illness

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