Skip to main content

Table 1 Studies included in the review

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

  1. *USA United States of America, SMA spinal muscular atrophy