Children's experiences of dialysis: a systematic review of qualitative studies

Tjaden, Lidwien A.; Tong, Allison; Henning, Paul; Groothoff, Jaap W.; Craig, Jonathan C.

doi:10.1136/archdischild-2011-300639

Cited by 95 publications

(69 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Makaroff 151 and Tjaden et al 152 scored similarly, with scores of 29 (low) and 31 (high) respectively (Table 56). It is also worth noting that Makaroff 151 did not score on criteria relating to quality assurance, as none were reported, or team discussion, as there was only one review author.…”

Section: Quality Assessmentmentioning

confidence: 68%

“…Some were put in a special educational needs class and felt that this segregated them further from others. They felt disappointed that they were 'left out' (p. 399) 152 from society. Providing information to the school on potential barriers to activities, guidance on how best to overcome them, or alternative activities that would include the child with CKD with other children may help provide social support from an organisational level.…”

Section: Support For Self-managementmentioning

confidence: 99%

“…There were two reviews included in the CKD qualitative meta-review, 151,152 both published in 2012 in peer-reviewed journals (Figure 24). There were no repeated studies across the reviews, resulting in 30 qualitative primary studies (published between 1971 and 2011).…”

Section: Systematic Reviews Identifiedmentioning

confidence: 99%

“…There were no repeated studies across the reviews, resulting in 30 qualitative primary studies (published between 1971 and 2011). Both included reviews were qualitative syntheses: one on experiences of those with kidney failure 151 and the other specifically focusing on the dialysis experiences of children with kidney failure 152 ( Table 55).…”

Section: Systematic Reviews Identifiedmentioning

confidence: 99%

See 3 more Smart Citations

A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions

Taylor

Pinnock

Epiphaniou

et al. 2014

Health Services and Delivery Research

344

451

View full text Add to dashboard Cite

BackgroundDespite robust evidence concerning self-management for some long-term conditions (LTCs), others lack research explicitly on self-management and, consequently, some patient groups may be overlooked.AimTo undertake a rapid, systematic overview of the evidence on self-management support for LTCs to inform health-care commissioners and providers about what works, for whom, and in what contexts.MethodsSelf-management is ‘the tasks . . . individuals must undertake to live with one or more chronic conditions . . . [including] . . . having the confidence to deal with medical management, role management and emotional management of their conditions’. We convened an expert workshop and identified characteristics of LTCs potentially of relevance to self-management and 14 diverse exemplar LTCs (stroke, asthma, type 2 diabetes mellitus, depression, chronic obstructive pulmonary disease, chronic kidney disease, dementia, epilepsy, hypertension, inflammatory arthropathies, irritable bowel syndrome, low back pain, progressive neurological disorders and type 1 diabetes mellitus). For each LTC we conducted systematic overviews of systematic reviews of randomised controlled trials (RCTs) of self-management support interventions (‘quantitative meta-reviews’); and systematic overviews of systematic reviews of qualitative studies of patients’ experiences relating to self-management (‘qualitative meta-reviews’). We also conducted an original systematic review of implementation studies of self-management support in the LTCs. We synthesised all our data considering the different characteristics of LTCs. In parallel, we developed a taxonomy of the potential components of self-management support.ResultsWe included 30 qualitative systematic reviews (including 515 unique studies), 102 quantitative systematic reviews (including 969 RCTs), and 61 studies in the implementation systematic review. Effective self-management support interventions are multifaceted, should be tailored to the individual, their culture and beliefs, a specific LTC and position on the disease trajectory, and underpinned by a collaborative/communicative relationship between the patient and health-care professional (HCP) within the context of a health-care organisation that actively promotes self-management. Self-management support is a complex intervention and although many components were described and trialled in the studies no single component stood out as more important than any other. Core components include (1) provision of education about the LTC, recognising the importance of understanding patients’ pre-existing knowledge and beliefs about their LTC; (2) psychological strategies to support adjustment to life with a LTC; (3) strategies specifically to support adherence to treatments; (4) practical support tailored to the specific LTC, including support around activities of daily living for disabling conditions, action plans in conditions subject to marked exacerbations, intensive disease-specific training to enable self-management of specific clinical tasks; and (5) social support as appropriate. Implementation requires a whole-systems approach which intervenes at the level of the patient, the HCP and the organisation. The health-care organisation is responsible for providing the means (both training and time/material resources) to enable HCPs to implement, and patients to benefit from, self-management support, regularly evaluating self-management processes and clinical outcomes. More widely there is a societal need to address public understanding of LTCs. The lack of public story for many conditions impacted on patient help-seeking behaviour and public perceptions of need.ConclusionsSupporting self-management is inseparable from the high-quality care for LTCs. Commissioners and health-care providers should promote a culture of actively supporting self-management as a normal, expected, monitored and rewarded aspect of care. Further research is needed to understand how health service managers and staff can achieve this culture change in their health-care organisations.Study registrationThis study is registered as PROSPERO CRD42012002898.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

show abstract

Section: Quality Assessmentmentioning

confidence: 68%

Section: Support For Self-managementmentioning

confidence: 99%

Section: Systematic Reviews Identifiedmentioning

confidence: 99%

Section: Systematic Reviews Identifiedmentioning

confidence: 99%

See 2 more Smart Citations

A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions

Taylor

Pinnock

Epiphaniou

et al. 2014

Health Services and Delivery Research

344

451

View full text Add to dashboard Cite

show abstract

“…Social rehabilitation and quality of life of pediatric dialysis patients are poor [12]. Full-time school attendance is only possible every other day-if at all.…”

Section: Introductionmentioning

confidence: 99%

Nocturnal intermittent hemodialysis

Thumfart

Müller

2014

Pediatr Nephrol

View full text Add to dashboard Cite

Preemptive renal transplantation is the method of choice for end stage renal disease in childhood and adolescence. However, without preemptive transplantation, waiting time for kidney transplantation might exceed several years. The poor quality of life and the extremely high morbidity and mortality rates of dialysis patients have led to the development of intensified hemodialysis programs in which the modes of dialysis (short daily, nocturnal intermittent or daily nocturnal) are different. Such programs have been shown to significantly improve several uremia-associated parameters, such as blood pressure, phosphate control, anemia and growth retardation, in both adult and pediatric (children and adolescents) patients and lead to a reduction in medications, including phosphate binders, erythropoietin and antihypertensive agents. Fluid limitations and dietary restrictions can also be lifted. With respect to psychosocial rehabilitation and quality of life, nocturnal intermittent dialysis programs provide a reasonable compromise of all forms of intensified programs. Experiences and practical approaches of our own in-center nocturnal intermittent hemodialysis program in the light of the recent publications are described in this review.

show abstract