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Caring for siblings: same family, same disease, different needs

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Family members can have very different ways of coping with disease. How can you ensure siblings’ care plans are as individual as they are?

Emma Vincent

Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive fibrotic interstitial lung disease of unknown origin. Most of my patients with IPF are breathless with either a dry or productive cough.

IPF is incurable and treatments to slow disease progression are currently limited.

“Caring for a patient with IPF is both rewarding and challenging in equal measure”

Survival for patients with IPF in the UK is approximately three years from the time of diagnosis, however this rate of progression tends to vary greatly.

Caring for a patient with IPF is both rewarding and challenging in equal measure. Despite its idiopathic (unknown) cause, it can affect siblings and this can present the patient, family and nurse with a unique circumstance.

Siblings may have a lot in common – similar values, beliefs and levels of independence.

However, in contrast they may have completely different ways of coping with their disease. It can sometimes feel as nurse that I am ‘piggy in the middle’. Whilst trying to listen to both sides of their individual stories without any judgement, I listen to their assumptions of one another.

“Both sets of hopes, fears, expectations and ideas may vary considerably”

Both sets of hopes, fears, expectations and ideas may vary considerably, and maintaining patient confidentiality is vital…. whilst also trying to provide compassionate care.

As a nurse I become embedded in family networks during their period of care. I can listen first hand to their hopes for both family members. The potential loss, the perceived guilt and the grief can be immense for all those involved.

Too easily, siblings become defined by their disease, the family may assume identical care will suit both patients, particularly if one has been diagnosed before the other.

“Compassionate care for siblings is more than treating often brother and brother as separate patients”

Compassionate care for siblings is more than treating often brother and brother as separate patients. They are of course different people, but it is much more complex than that. It is about striving for equality and valuing the diversity their decision making. It is also about setting aside your own beliefs and assumptions.

Empowering and enabling independent values and expectations within family networks is a specialist skill that enables patients to have the experience of self worth and ownership over their care…even if their sibling choses an opposite approach.

Above all nurses have a very sensitive role to play when, not if, one sibling dies before the other. Emotions are complex, both for the sibling who breathes on and for the family dealing with the current and future loss.

“My nursing evolves with each reflection, it enables me to focus upon future shared commitment”

As I reflect upon caring for siblings with IPF I also consider my own needs.

This is a continual process for me and is essential for all nurses providing palliative care. My nursing evolves with each reflection, it enables me to focus upon future shared commitment with my next patient and their family. It also enables me to continue to provide compassionate care, in a way I would for my own siblings.

Emma Vincent, Interstitial Lung Disease Nurse

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