From: Psychological burden in spinal muscular atrophy patients and their families: a systematic review
No. | Author | Study location | Population studied | Study objective | Findings |
---|---|---|---|---|---|
1 | Ying Qian et al. [6] | USA | 21 individuals with SMA (age: 8–26 years; mean age of diagnosis: 2,05 years; type-1: 1, type-2: 8, type-3: 12); 64 parents of individuals with SMA (type-1: 12, type-2: 29, type-3: 22) 11 Clinicians | To investigate: 1) factors influencing how families arrive at a diagnosis, as described by parents and clinicians; 2) parents' perspectives on newborn screening; and 3) the impact of SMA on the lives of people with SMA and their parents | Parent’s experience: they feel sad to see the decreased function of their child compared to other normal children |
2 | Hsin-Mei Ho et al. [9] | Southern Taiwan | 9 patients with SMA (age: 25–54 years; age of onset: 1–14 years; type-2: 2, type-3: 7) | To explore lived experiences of patients afflicted with SMA | Patient’s experience: they feel sad and stressed due to their inability to be independent |
3 | Emily J Higgs et al. [10] | Australia | 13 individual parents representing 7 families of SMA type-1 patients (age at diagnosis: < 1–5 years; age at death: < 3–12 years) | To examine parents’ perspectives of having a child with SMA type 1, from diagnosis until loss of their children, to inform clinical practice by identifying the most meaningful aspects to parents to develop a supportive strategy | Family’s experience: they feel angry, frustrated, and depressed due to the disease's diagnosis and familial history aspect. They blame themselves |
4 | Bao-Huan Yang et al. [14] | Taiwan | 19 parents of children with SMA (age: 9–12 years; the age of onset: 4 month–3 years) | To explore the parents’ anticipatory loss of school-age children with type-1 or type-2 SMA | Parent’s experience: they feel sad for the uncertainty of their child’s future and death |
5 | Sally Lawton et al. [16] | Australia | 6 interviewed and 28 surveyed relatives of SMA patients (type-1: 7, type-2: 8, type-3: 4) | To investigate family members' perspectives on the journey to receiving a diagnosis. To explore their views on the potential of earlier diagnosis | Parents’ experience: they feel devastated and denied the uncertain diagnosis and the disease’s outcome. They feel frustrated about the future of their child |
6 | Ali Asghar Jesmi et al. [18] | Bojnord, North of Khorasan province, Iran | 5 patients’ SMA type III and one patient’s wife (age: 26–32 years) | To investigate the lived experiences of SMA patients | Patient’s experience: they feel shame and blame the disease due to their inability to do a regular thing. They feel helpless when thinking about their future |
7 | Michele A Farrar et al. [17] | Australia | 7 primary carers of 8 children with SMA (mean age: 6,4; type-2: 5, type-3: 3) | To gain insights into the effect caring for a child with SMA has on financial (both direct and indirect), opportunity, and psychosocial costs associated with SMA care from a primary carer perspective within the Australian health system | Family’s experience: they feel helpless as the SMA forces them to continuously worry and limit them to have recreation due to the time-consuming taking care of them |