Living with a person suffering from an anxiety disorder : carers’ experiences of family routines and occupations

Abstract

Background: Anxiety Disorders (AD) are very common and there are different sub-types such as Separation Anxiety Disorder (SAD), Generalised Anxiety Disorder (GAD) and phobias. Occupational Therapy intervention and others are mostly directed towards the person suffering from an Anxiety Disorder, rather than to his or her carers, who tend to be overlooked from care delivery and support. Aim: The aim of this study is to gain information about the lived experiences of responsible carers taking care of family members suffering from Anxiety Disorders and their views regarding routines and occupations. Method: A qualitative research design was used. Eight participants were chosen through purposive sampling according to selected inclusion criteria. Participants had to be Gozitan residents, responsible carers of a family member diagnosed with an Anxiety Disorder and who attended community-based mental health Occupational Therapy services and the family member they care for was middle-aged (40 to 55 years old). Once the study was approved by both the FREC and UREC, participants were contacted via an intermediary, who provided them with a letter of information, inviting them to participate and a consent form to sign to confirm their acceptance of participation in the study. Data was collected through a semistructured interview that used open-ended questions about family members’ experiences, carers’ routines and occupations together with carers’ lived experiences. This was held at a place and time convenient for the eligible participants. From the audio-recorded interviews, data was analysed via transcriptions, repeated data from participants was grouped and extracted. Data was analysed through thematic analysis. The grouped data was then formed into categories and sub-categories. Participants were kept anonymous throughout the data analysis procedure. Findings: Even though the lived experience of carers varied from one family member to another the majority of participants complained that they find it hard to make time for themselves, self-care and leisure due to their responsibilities as carers. Their routines were also dependent on those of their family members who were often highly reliant on them. They, therefore, have had to limit engaging in their own personal and social occupations in order to meet the family members’ needs and demands. Conclusion: Most carers felt pressured and stressed due to their responsibility of being a carer for a person, who was diagnosed with an Anxiety Disorder. Reduction in time spent on leisure activities, elements of burnout, impacts on leisure, changes in routines and occupations and even over-protectiveness have been the most salient findings from this study. The study points to the urgent need for carers to be more directly involved in Occupational Therapy intervention and being supported in their role of responsible carers to a family member with an Anxiety Disorder.