Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis: a cross-sectional study

Abstract

Purpose: Our study aimed to identify caregiver characteristics (gender, age, occupational status, educational attainment, relation to care recipient), care recipient characteristics (age, disease subtype), and caregiving factors (hours of care, perceived caregiving burden) associated with symptoms of depression among informal caregivers of persons with systemic sclerosis (also known scleroderma).

as Materials and methods: A questionnaire was developed and administered online from December 2016 to June 2017 to informal caregivers of people with scleroderma, including the Patient Health Questionnaire-9 to assess depressive symptoms. Multiple linear regression was used to identify factors associated with depressive symptoms.

Results: Caregivers (n = 202) were 60.9% male. Average age was 57.2 years (standard deviation = 14.4 years). Most caregivers were partners (72.3%), children (11.9%), or parents (7.4%), of care recipients. Self-reported caregiving burden (standardized regression coefficient $\beta$ = 0.54, p < 0.001) and hours of care per week ($\beta$ = 0.17, p = 0.005) were significantly associated with greater symptoms of depression.

Conclusions: Depressive symptoms were primarily associated with caregiving burden among a sample of scleroderma caregivers. There is need to develop interventions targeting caregivers in scleroderma. Rehabilitation professionals should consider the specific needs of scleroderma caregivers and should provide or refer to support services as appropriate.

Implications for Rehabilitation

• Most people diagnosed with scleroderma are cared for by an informal caregiver and the majority of these caregivers experience mild symptoms of depression.

• For caregivers that experience moderate to severe symptoms of depression, the ability to provide care to a loved one with scleroderma may be more difficult.

• Rehabilitation professionals should be aware of the burden faced by caregivers of persons with scleroderma and provide support services or referrals as appropriate.

Keywords:

• Caregivers
• rare disease
• depressive symptoms
• scleroderma
• systemic sclerosis

Acknowledgements

We thank our Scleroderma Caregiver Advisory Team Members: Marcia Greiten, BA, Goleta, USA; Christy McCaffery, Philadelphia, USA; Judi McDonald, Bedford, Canada; John Michalski, Macomb, USA; Mathieu Ross, Quebec City, Canada; Lisa Spinney, Berlin, USA; Terry Stacey, Oshawa, Canada; Linda Tarantino, Larkspur, USA.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was supported by a grant from the Rare Disease Foundation and the BC Children’s Hospital Foundation (Funding Reference Number 173-16; PI Rice). Ms. Rice was supported by a Vanier Graduate Scholarship. Ms. Levis was supported by a Canadian Institutes of Health Research Frederick Banting and Charles Best Canadian Graduate Scholarship doctoral award. Dr. Thombs was supported by a Fonds de recherche du Québec - Santé researcher salary award.