Psychological, sociocultural and economic coping strategies of mothers or female caregivers of children with a disability in Belu district, Indonesia

Abstract

Caring for children with a disability can cause a range of psychological and socioeconomic challenges for parents and caregivers, such as anxiety, depression, inability to find affordable and appropriate childcare, loss of income and expenses related to disability specific treatment. As part of a study exploring the impacts of childhood disability on mothers or female caregivers and families, and the copy strategies they used, this paper describes strategies employed by mothers or female caregivers to cope with challenges associated with childhood disability within their family in Belu district, Indonesia. A qualitative approach using one-on-one in-depth interviews was used to collect data from participants (n = 22) who were recruited using a combination of purposive and snowball sampling techniques. Interviews were recorded, transcribed verbatim and imported to NVivo 12 for analysis. A qualitative framework analysis was used to guide data analysis. The conceptual framework of coping strategies guided the conceptualisation and discussion of the findings. The findings showed that active psychological coping strategies, including cognitive or acceptance strategies, knowledge of both health condition and socio-academic related development of children with a disability, and family relationship and support, were used by the participants to cope with psychological challenges facing them. Self-reliance and religious/spiritual coping strategies were also utilised. Sociocultural strategies, such as social withdrawal or disengagement, professional support and culture-based support, were used by the participants to cope with social impacts, stigma, and discrimination associated with childhood disability. Participants also reported using financial strategies such as selling of family assets to cope with the economic challenges. The findings indicate the need for programs and interventions that address the needs of mothers and female caregivers and their families, to assist with effectively managing the significant challenges they face when caring for a child with a disability. Further studies are needed, with a larger number of participants and the inclusion of fathers or male caregivers, in order to better understand the broader coping experience of childhood disability impacts within families.

Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia

“…The district has a total population of 204,541 people that are distributed among 12 sub-districts [ 34 ]. The district has a state special school for CWD ( Sekolah Luar Biasa Negeri , also known as SLBN), which provides education for CWD at elementary, junior high school, and senior high school [ 35 , 36 ]. There are also two private rehabilitation centers for CWD, which are called Pusat Rehabilitasi Hidup Baru (New Life Rehabilitation Center) and run by sisters of Franciscan, and Bhakti Luhur, run by the sisters of ALMA (Asosiasi Lembaga Misionaris Awam) Congregation.…”

“…As part of a qualitative study exploring impacts of caring for CWD on mothers or female caregivers and their coping strategies [ 35 , 36 ], this paper describes barriers to the access to healthcare and rehabilitation services for CWD in Belu district, Indonesia. This study was conducted from August to September 2019.…”

The impact of working in COVID-19 hospital on mental health and wellbeing: A qualitative study with nurses in a hospital in East Nusa Tenggara, Indonesia

“…The process of data analysis was both deductive and inductive and followed methods described by Ritchie and Spencer's ve steps framework analysis [45,46]. The ve steps include (i) familiarization by reading each transcript repeatedly, marking ideas and providing comments to the data extracts to search for meaning, pattern and ideas; (ii) identifying a thematic framework by making judgements and writing down key issues and concepts from the participants; (iii) indexing all the data by creating open coding to look for similar or redundant codes and reduce them into smaller number by grouping together to reach a few overarching themes and sub-themes; (iv) creating a chart by arranging thematic framework so that data could be compared within each interview and across all interview; (v) mapping and interpretation data as a whole [45,47]. Data analysis was performed in Indonesian and then the selected quotes for publication were translated into English by authors (GAA, NKF) who speak both languages.…”

Family and Individual Quality of Life in Parents of Children with Developmental Disorders and Diabetes Type 1

“…This may prompt them to re-examine whether they are sufficiently effective in their parental role. Additionally, the inability to balance between different obligations can result in feelings of guilt and mourning of the lost opportunities, demotivation for daily activities, low satisfaction and feeling of vitality, a negative self-perception and low self-esteem, as well as depression and reduced quality of life [ 5 , 6 , 7 , 8 ]. Even though most families adapt to the situation over time and find their own routine, it has been confirmed that parental perception of the quality of life depends on the severity of the illness and the extent of disability of the child [ 9 , 10 ].…”