Worries of family and friends could affect recovery of brain haemorrhage patients
(23 July 2013)
Scientists say more support is needed to ease the fears of family and friends of brain haemorrhage patients after new research suggested that their worries could inadvertently affect the recovery of their loved ones.
The research team from Durham University and the University of Liverpool, in the UK, and the University of Erlangen-Nürnberg, in Germany, found that patients who have suffered from subarachnoid haemorrhage (SAH) might not recover physically and socially as well as expected if their partner or friends are overly worried that the illness will happen again.
SAH is bleeding into the subarachnoid space, a region between membranes surrounding the brain. It can cause stroke, permanent severe brain defects or death.
Relatives and friends of patients might naturally be overprotective of recovering patients and restrict their day-to-day activities because of their own anxieties, which could hinder a patient’s recovery, the researchers said.
In order to aid patients’ recoveries, attention should be paid to the experiences of family and friends to ease their worries and provide them with additional support, the researchers added.
The research was commissioned and funded by the Clarke Lister Brain Haemorrhage Foundation (CLBHF) and published in the Journal of Neurosurgery.
Researchers surveyed 69 patients, who had experienced a spontaneous SAH between May 2005 and August 2006, and the family member or friend who was most involved in providing informal support after the illness. The patients had been treated at either Newcastle General Hospital or The James Cook University Hospital, in Middlesbrough.
Just over one year after suffering the haemorrhage, patients’ family and friends were found to be significantly more fearful of a SAH recurring than the patients themselves, though both groups were equally fearful of other illnesses such as lung cancer or heart attacks.
The study also investigated which, if any, aspects of the patient’s recovery might have been affected by the patient’s own fears, or the fears of their family and friends of a SAH recurrence.
The only aspect of recovery where patients’ fears about a SAH recurring verged on having a significant impact was when their worries interfered “a little” with work and daily activities.
However, family and friends’ fears were significantly related to certain aspects of the patients’ recovery. For example, the patients whose family and friends were most worried tended to rate their health as worse and had more limitations in their physical functioning and social activities.
Patients’ work and daily activities were also more likely to be affected by emotional problems, the researchers said.
However, the research found that family and friends’ fears did not significantly contribute to the patients’ levels of anxiety or depression, how much energy they had or pain they were in, or the effects that their physical problems were having on their work and daily activities.
The research team highlighted the need to conduct further research to better understand why the worries of family and friends might impact on a patient’s recovery.
“Our findings suggest that although they may be acting with the best of intentions, a desire to protect the patient could mean that they help patients a bit too much with everyday physical tasks and inadvertently place restrictions on what the patient does both physically and socially.
“It’s therefore important to take care of the emotions and anxieties of family and friends, as well as the patient, early on in the treatment and rehabilitation process.
“If the source of relatives and friends’ fears can be identified and addressed, the functioning of patients may potentially be improved.”
The CLBHF, based in Peterlee, County Durham, was established following the tragic and sudden death of ten year old Clarke Lister, who died of a subarachnoid haemorrhage in June 1996.
Mr Roger Strachan, a Neurosurgeon at The James Cook University Hospital in Middlesbrough, and a Trustee of the CLBHF, said: "The effects of a subarachnoid haemorrhage can be devastating, causing death in over a quarter of sufferers within 48 hours, and leaving a third disabled by the effects of the haemorrhage.
“Research of this kind is very important because we have often concentrated on the effects of SAH on patients and perhaps spent too little effort in studying the effects on families and carers.
“The impact that a sudden unexpected and potentially serious brain haemorrhage can have on families, and their interactions with each other, can be substantial, and yet is often overlooked.
“We need more research that helps us understand this impact, and enables all of us to help patients who recover well and their families regain a normal life."
Clarke’s mother, Carole Lister, who founded the CLBHF, said: “This is truly significant progress in meeting the needs of the carer, as without the carer the patient would obviously suffer, taking longer in making a good recovery.
“Imagine from the carers’ point of view, how hard it must have been to see their loved ones almost die, and who then survived, often becoming a different person.
“This new challenge of accepting this, and dealing with trying to get back to living life as normal as possible, has a massive impact on the whole family.
“This is because on discharge there is very little ‘support’ meaning that the responsibility of the everyday after-care lies with the family.
“Often this means the loss of income, pressure on relationships and ultimately a poor quality of life. I welcome this research, which will inevitably raise a greater understanding of the whole situation, bettering the quality of life all round in support of the carers.”