Partners Grieve Rheumatoid Arthritis Diagnosis As Much As Patients
Offering support to partners of newly diagnosed RA patients
Partners of patients newly diagnosed with rheumatoid arthritis (RA) are equally emotionally affected by the diagnosis and go through the same grieving process as the patients themselves, according to the results of a study presented today at EULAR 2010, the Annual Congress of the European League Against Rheumatism in Rome, Italy.
In a discrete UK study, investigators interviewed the partners of RA patients to assess their thoughts and feelings at the time of their partners RA diagnosis and the ways that they adapted to the diagnosis, over time. Analysing the transcripts of in-depth interviews, researchers reported that all partners of RA patients reported common issues, grouped into the following areas:
* Emotions: Partners commonly expressed feelings of immense sadness for a perceived loss of the future, sadness for their experiences of their spouse, but also for themselves.
* Adaptation: Several of the partners interviewed hoped for a “cure” for RA with one saying “medicine can do anything nowadays, yes it’s a problem but they’ll give her a tablet and it will go away.” Over time however, the interviews showed that partners came to terms with the permanency of the condition.
* Coping Strategies: Some partners reported experiencing feelings of denial, helplessness, and concealment of both the condition and its impact on their relationship.
* Support and Information: Whilst all partners interviewed were reluctant to attend patient support groups, they acknowledged their importance, with one participant stating “I think it would be really helpful to people who are newly diagnosed but I would have to have my arm twisted to go there”.
“The results of our research have shown that partners of patients are as emotionally affected as the patient by the diagnosis,” said Julie Taylor, University of the West of England, Bristol, United Kingdom and lead author of the study. “We recommend that, if clinicians and health care professional are able to offer support to the partners of patients at the time they require it, then this will create a foundation of greater support for the patients, resulting in improved emotional outcomes for both parties.”
“Diagnosis with rheumatic conditions can have a devastating impact on family life,” said Neil Betteridge, Vice President, PARE and Chief Executive Officer of Arthritis Care in the UK. “Many respondents to a recent survey conducted by Arthritis Care* tell us of a grieving process they’ve been through – for the loss of a world which so recently had been their biggest source of security. We encourage healthcare professionals to offer support and guidance to partners of those diagnosed with rheumatic conditions, in addition to the patient, in the hope of minimising the impact of diagnosis on patient’s closest relationships.”
Six spouses of patients diagnosed with RA at the North Bristol Health Care Trust with a minimum of three years since diagnosis were interviewed on a range of topics. Transcripts were subject to thematic analysis using the Hermaneutic phenomenological approach, a technique designed to give a descriptive interpretation of interview responses.
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