Tag: parents

Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multi-system disease that significantly deteriorates the quality of life for those affected. There is no established effective treatment, and a lack of research on what is needed by severely affected young people with ME/CFS and their caring parents to cope with the disease. The aim of this study was to investigate the needs of young people affected and their parents in order to subsequently build a tailored treatment model for this age group upon this basis.

Methods: Needs were explored using topic-guided focus groups and an adapted diary method. Patients participated either in an online focus group with five sessions discussing needs related to five topics (sports/physical activity/mobility, self-care, mental activity, social contacts, and school/vocational training/study/profession) or in the adaptive diary approach, receiving and answering the same stimuli and questions in the format of voice and text messages. Additionally, focus groups with parents comprised two sessions each, targeting needs of their children and themselves, respectively. Data were analysed by reflexive thematic analysis.

Results: We included 14 young people with ME/CFS (aged 12 to 25 years), of whom five participated in a focus group and nine in the adaptive diary approach. Eighteen parents took part in three focus groups, including three couples. In the patient sample, four themes of unmet needs were identified: (i) not being left alone with the disease, (ii) flexibility and understanding of healthcare providers and authorities, (iii) having to explain oneself less to others, and (iv) appreciation of the family filling part of the healthcare gap. Among parents, the following four themes were revealed: (i) not being left alone with the disease, (ii) health care adapted to ME/CFS, (iii) knowledge, understanding, and acceptance of ME/CFS, and (iv) confidence in dealing with ME/CFS.

Conclusions: The needs of young people with ME/CFS and their parents, respectively, overlap clearly and demonstrate the importance of a needs-based adaptation of healthcare services.

Source: Kircher A, Mayer-Huber S, Eberhartinger M, Mihatsch L, Apfelbacher C, Stojanov S, Behrends U. Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany. BMC Public Health. 2026 Sep 29;26(1):2942. doi: 10.1186/s12889-026-29549-6. PMID: 42864639; PMCID: PMC13656452. https://pmc.ncbi.nlm.nih.gov/articles/PMC13656452/ (Full text)

When a parent is chronically ill: chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic illness may reshape not only the life of the ill parent but also that of the entire family, but research in this area remains limited. More specifically, little is known about how an ill parent and the family respond to a particularly devastating and controversial chronic illness, chronic fatigue syndrome (CFS).

OBJECTIVES: The objective of this study was to describe the responses of the parent and the ensuing family system responses to the presence of chronic fatigue syndrome as a chronic parental illness.

METHODS: Parents were interviewed individually, and then the ill parent and as many immediate family members as possible were interviewed collectively. After consent or assent, interviews were audiotaped and transcribed. Thematic analyses at the individual, intrafamily, and across-family levels were used to explore these phenomena.

RESULTS: Eight ill parents first described the onset of illness, an ongoing struggle to receive diagnosis and care, and the significance of the illness in transforming present and future roles. Multiple members of the family together with the ill parent described how they struggled with the reality of the illness, the shifting roles and responsibilities, the reduced family income, and the frequent social isolation that could be exacerbated by the controversial nature of the illness. Families described and demonstrated their struggles to maintain normal family life and plans in the face of continuing uncertainty.

DISCUSSION: This study is situated within current scholarship on family responses to chronic parental illness. The value of the family research interview is affirmed. Recommendations are made for future directions in family nursing research exploring responses of families in which a parent is chronically ill.

 

Source: Donalek JG. When a parent is chronically ill: chronic fatigue syndrome. Nurs Res. 2009 Sep-Oct;58(5):332-9. doi: 10.1097/NNR.0b013e3181ac156f. https://www.ncbi.nlm.nih.gov/pubmed/19752673

 

Chronic fatigue syndrome in adolescents: do parental expectations of their child’s intellectual ability match the child’s ability?

Abstract:

OBJECTIVE: This cross-sectional study aimed to measure the discrepancy between actual and perceived IQ in a sample of adolescents with CFS compared to healthy controls. We hypothesized that adolescents with CFS and their parent would have higher expectations of the adolescent’s intellectual ability than healthy adolescents and their parent.

METHODS: The sample was 28 CFS patients and 29 healthy controls aged 11-19 years and the parent of each participant. IQ was assessed using the AH4 group test of general intelligence and a self-rating scale which measured perceived IQ.

RESULTS: Parents’ perceptions of their children’s IQ were significantly higher for individuals with CFS than healthy controls.

CONCLUSIONS: High expectations may need to be addressed within the context of treatment.

 

Source: Godfrey E, Cleare A, Coddington A, Roberts A, Weinman J, Chalder T. Chronic fatigue syndrome in adolescents: do parental expectations of their child’s intellectual ability match the child’s ability? J Psychosom Res. 2009 Aug;67(2):165-8. doi: 10.1016/j.jpsychores.2009.02.004. Epub 2009 Apr 16. https://www.ncbi.nlm.nih.gov/pubmed/19616144

 

Diagnose and be damned. Corroboration is important when children’s illnesses are diagnosed

EDITOR—Marcovitch’s arguments about treatment of the chronic fatigue syndrome (myalgic encephalomyelitis) in children are illogical.1 He writes of the “hatchet job” performed by Panorama in the programme of 8 November and refers to the Washington Post’s policy that news requires corroboration.

One of the responses to his article, by Wessely [published here, p 1005], states, “contrary to the message of the programme, the management of chronic fatigue syndrome in children is not contentious.”2 In referring to a case reported by Panorama Marcovitch states that “parents’ views and those of the local medical team were in conflict.” Yet the programme made clear that the dispute was between the parents supported by their own medical advisers and the local medical team, so perhaps there is greater disagreement than has been asserted.

Marcovitch discussed at length Munchausen’s syndrome by proxy; Panorama labelled one of the cases of myalgic encephalitis as being a case of this syndrome. No one likes receiving emotional, intemperate outbursts, even from people who think they have been wrongly accused. But what is sauce for the goose is surely sauce for the gander. Even doctors sometimes make mistakes, yet Marcovitch disregards the possibility that parents, knowing themselves innocent, may feel themselves to have been receiving exactly the same type of vituperative attack that he objects to when doctors are on the receiving end. Such allegations turn on fact rather than clinical opinion so should be subject to Marcovitch’s own test of corroboration.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1117876/

 

Source: Pheby D. Diagnose and be damned. Corroboration is important when children’s illnesses are diagnosed. BMJ. 2000 Apr 8;320(7240):1004. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1117876/ (Full article)

 

Cognitive idiosyncrasies among children with the chronic fatigue syndrome: anomalies in self-reported activity levels

Abstract:

The possibility that children with the chronic fatigue syndrome (CFS) and their parents tend to display idiosyncratic cognitive processing concerning levels of activity was examined by means of subjective and objective measures of current activity, together with subjective and objective measures of desired and expected future activity.

The degree to which subjective reports of current activity level reflect objectively measured activity level was examined in a group of children with CFS and a healthy control group. All subjects were assessed over a 3-day period by means of ambulatory activity monitoring, and self-reports and parent-reports of current activity level were collected by means of visual analog scales.

Analysis of variance revealed a significant interaction between the method of measurement (objective versus subjective) and the participant group (CFS versus Healthy) with the CFS children and their parents underestimating actual level of activity relative to the healthy group. Desired and expected levels of future activity were also assessed by means of subjective report. Child and parent expected levels of future activity were compared with their desired levels.

Although expected levels of future activity were similar in the two groups, the divergence between expected levels and corresponding desired levels was significantly greater in the CFS group. These results are discussed in terms of idiosyncratic cognitive processes, which are hypothesized to be associated with CFS and which may play a role in the maintenance of the disorder.

 

Source: Fry AM, Martin M. Cognitive idiosyncrasies among children with the chronic fatigue syndrome: anomalies in self-reported activity levels. J Psychosom Res. 1996 Sep;41(3):213-23. http://www.ncbi.nlm.nih.gov/pubmed/8910244