Spouses of people with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) report feeling insecure about their situation and dissatisfied with the degree of information and support provided by healthcare teams, according to an interview-based study.
Most of them also expressed the desire to be more engaged in the care of their partners.
To address this issue, clinicians should communicate more with patients’ spouses and encourage their participation in the care process, as well as be mindful of particular areas where more assistance may be needed, the researchers said.
The study, “Everyday life experiences of spouses of patients who suffer from pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension,” was published in the journal ERJ Open Research.
A chronic illness such as PAH or CTEPH can be a life-changing experience not only for the ones with the disease, but also for their families and caregivers.
Taking into account the important role of spouses and the struggles they face when sharing their life with someone with a chronic illness, researchers from Skåne University Hospital and Karolinska Institutet in Sweden investigated the experiences of spouses living with a partner with PAH or CTEPH.
They interviewed 14 spouses — five women and nine men, with a mean age of 68 years — selected from a clinic at Skåne University Hospital, whose partners had received a diagnosis of PAH or CTEPH between one and 14 years prior to the study.
Spouses were asked about their experiences related to daily living, and the participation, information, and support they had received regarding their partner’s care.
The interviews revealed that spouses’ experiences fell into two main categories, which the scientists dubbed “living in an insecure life situation” and “providing and receiving information and support.”
In the first category, spouses revealed mixed feelings of shock and relief when their partner was diagnosed. They also reported feeling uncertain about the future, including wondering if treatments would be effective or if their partner would stop taking the medications because of side effects.
In general, however, spouses had high hopes for medical research and for a cure for the disease in the near future.
A particular obstacle pinpointed by spouses was difficulty discussing the disease with healthcare staff, including expectations for the future and whether certain activities, including sex, were appropriate. Spouses found it particularly challenging to get this information, due to concerns about going behind their partner’s back and because of healthcare confidentiality rules.
“To protect me, NN might not even want to tell me the truth, and then it would be good to get information from another source,” one of the spouses said.
Those with children worried about the possibility of the disease being inherited, and the impact on their child’s well-being of having a parent with a chronic and fatal illness. However, despite sometimes having to take on more responsibility with the children, spouses did not consider this as a burden.
Although some spouses did not feel their social lives had been affected, thanks to medications and understanding from others, others described a decrease in their social lives, along with a reduction in the activities their partner was able to do.
Some spouses reported that the disease caused a financial strain, the reasons for which included having to take unpaid leaves to accompany their partner to the hospital, travel expenses for healthcare visits, and a change in job to be able to give more support to their partner.
Most of the interviewed spouses said they had difficulties in providing and receiving information and support on their partner’s illness, finding it hard to become more involved in their care. They felt frustrated that they rarely received complete information about the disease and its treatment, either from their partner or from clinicians.
As a result, many spouses felt that it was difficult to provide emotional support to their partners.
“NN is like, if you do not talk about [the disease], it does not exist,” a spouse told researchers.
In light of this, “it is understandable and advisable for the spouse to seek support outside the closest family,” according to the researchers.
Most spouses thought it was important for them to take part in activities outside the disease where they could be part of everyday life, such as work, associations, volunteering, a hobby, or seeking spiritual support. Through these activities, they were often able to meet people who understood their situation.
Spouses’ opinions about engaging with disease-specific associations and support groups varied. Some considered it a positive experience, while others found it hard to learn about other people whose disease worsened or was fatal.
Given the finding that “spouses were only partly satisfied with their life situation,” the team suggested that “to support spouse’s participation, the PAH/CTEPH team should encourage the patient to bring their spouse along, and offer them the opportunity to participate in the contacts with healthcare and provide information on an individual family perspective.”
They also emphasized the importance of acknowledging the needs of children who have a parent with PAH or CTEPH.