Effectiveness of an educational intervention of Physiotherapy in parents of children with haemophilia

Cuesta‐Barriuso, Rubén; Torres-Ortuño, Ana; López-García, Marcia; Nieto-Munuera, Joaquín

doi:10.1111/hae.12447

Cited by 11 publications

(9 citation statements)

References 17 publications

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“…Although educational physiotherapy interventions have shown to be effective in parents of children with hemophilia [27] and in combination with home exercises in adults with hemophilic arthropathy [26], improvements in the elbow joint were not observed. The sample size or the duration of the intervention might explain the insignificant results.…”

Section: Discussionmentioning

confidence: 99%

Manual and educational therapy in the treatment of hemophilic arthropathy of the elbow: a randomized pilot study

Cuesta‐Barriuso

Gómez–Conesa

López‐Pina

2018

Orphanet J Rare Dis

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BackgroundElbow arthropathy is characteristic in patients with hemophilia. Arthropathy is manifested by decreased range of motion, pain, loss of strength and muscular atrophy, and axial changes. The objective is to evaluate the safety of two physiotherapy programs combining manual therapy and home exercises with educational sessions in patients with hemophilic elbow arthropathy.MethodsThis is a randomized study with 27 patients with elbow hemophilic arthropathy with a mean age of 34.48 (SD: 12.99) years, were randomised to Manual Therapy group, educational group and control group. The physiotherapy programmes were: manual therapy through joint traction, passive muscles stretching and proprioceptive neuromuscular facilitation; and educational sessions and daily home exercises. The study lasted for twelve weeks, with two sessions a week in manual therapy group and one session every two weeks with daily home exercises in educational group. The variables measured were range of motion of elbow, biceps strength, circumference of arm, and elbow pain.ResultsThe treatment with manual therapy improved the circumference of arm, flexion elbow and elbow pain. Six months later, MT group still enjoyed improved. In the educational group there were improvements, but not significant, in the measured variables.ConclusionNeither of the two physiotherapy interventions caused elbow hemarthrosis. The treatment with manual therapy improved the range of movement and circumference of arm, and lessened pain in hemophilic patients with chronic elbow arthropathy. No hemarthrosis was recorded during treatment or during the follow-up period. Larger randomized clinical trials are required to confirm the results of this study.Trial registration(NCT02198040). Registered 22 July 2014, retrospectively registered.Electronic supplementary materialThe online version of this article (10.1186/s13023-018-0884-5) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Manual and educational therapy in the treatment of hemophilic arthropathy of the elbow: a randomized pilot study

Cuesta‐Barriuso

Gómez–Conesa

López‐Pina

2018

Orphanet J Rare Dis

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“…Haemophilia is a condition usually diagnosed during childhood, and psychosocial aspects of the early years have attracted much attention in the literature. Many authors , including our group , have addressed the psychological impact of the disease, and the necessary support for the family and young patient as he experiences growing up with haemophilia from infancy, through childhood and adolescence . However, the issues of adults or ageing persons with haemophilia (PWHs) have been less frequently discussed.…”

Section: Introductionmentioning

confidence: 99%

Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support

Torres-Ortuño

Cid-Sabatel²,

Barbero

et al. 2017

Vox Sanguinis

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This article discusses, from a psychological perspective, the life experience of the adult and ageing person with haemophilia, including psychological issues, aspects of his personal and social integration, decision-making, communication and other factors that may affect treatment adherence and quality of life. The aim was to provide haematologists and healthcare staff with knowledge and resources to improve communication and support for adult persons with haemophilia, and raise awareness on psychosocial issues related to quality of life, sexuality and aspects associated with ageing with haemophilia. Adulthood is a period of many personal and social changes, and ageing with haemophilia is a relatively new phenomenon due to increased life expectancy in this population. Patients have to adapt to the disease continuously when facing new expectations, life projects and issues arising with increasing age, so the healthcare team should be ready to provide support. A good therapeutic alliance with the patient must be accompanied by assessment and counselling in aspects including satisfaction, perceived difficulties and barriers, and emotional needs. Raising awareness of all this will result in the patient benefiting from the recent improvements in treatments.

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“…Education about haemophilia, its management and the physical aspects of the condition was shown to reduce stress among 22 mothers of children with haemophilia aged under 4 [24]. This non-randomised Spanish study assigned mothers to participate in an educational programme delivered by a physiotherapist or a control group who received usual care.…”

Section: Discussionmentioning

confidence: 99%

The impact on parents of having a child with haemophilia

Khair

Chaplin²

2016

The Journal of Haemophilia Practice

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Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought to understand the psychosocial impact of living with a child with haemophilia. Understanding how such demands affect parents and families who live with the daily threat of bleeding can help health professionals to provide effective support. A literature review was undertaken with the aim of summarising the key findings from studies published since 2000. The literature review describes many common themes from observational studies that were generally consistent with those emerging from interviews of parents of children with haemophilia. Few intervention studies were identified. Overall, this evidence shows that raising a child with haemophilia can be challenging for parents and the family. Quality of life is impaired in the parents of a child with haemophilia and that many aspects of life are affected. However, providing care can also be rewarding and programmes of support, education and appropriate treatment evidently improve the well-being of parents and families.

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Effectiveness of an educational intervention of Physiotherapy in parents of children with haemophilia

Cited by 11 publications

References 17 publications

Manual and educational therapy in the treatment of hemophilic arthropathy of the elbow: a randomized pilot study

Manual and educational therapy in the treatment of hemophilic arthropathy of the elbow: a randomized pilot study

Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support

The impact on parents of having a child with haemophilia

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