Table 1.
Summary of study characteristics, instruments, focus, and double ABCX model factors.
| Study, country of the study | Sample | Parent ages –Years (range and/or mean) | Child ages – Years (range and /or mean) | Instrument | Focus of the study | Double ABCX Model Factors |
|---|---|---|---|---|---|---|
| Benjak (2011), Croatia | 178 parents of children with ASD and 169 parents of TD children | ASD 28–84 (M = 46); TD 25–83 (M = 45) |
ASD 3–45 (M = 15); TD 2–47 (M = 14.6) |
1. Personal Wellbeing Index; 2. Self-Assessment of General Health |
The aim of this study was to assess subjective quality of life (SQoL) and general health status in parents of children with ASD; and to explore if their SQoL differs from SQoL in parents of TD children. |
xX Family Adaptation – Subjective QoL; xX Family Adaptation –Perception of General Health |
| Dabrowska (2008), Poland | 37 fathers of children with DS; 31 fathers of children with ASD; 30 fathers of children with CP; 32 fathers of TD children | DS M = 38.5; ASD M = 40.3; CP M = 41.9; TD M = 38.3 |
DS 1–22 (M = 9.9); ASD 2–20 (M = 8.1); CP 2–21 (M = 11.2); TD 1–20 (M = 8.2) |
1. The Sense of Coherence Questionnaire (SOC-29); 2. Coping with Stress Questionnaire (WCQ) |
The aim of this study was to explore relationship between SOC and coping style among fathers with children with DS, ASD, CP and TD children. |
cC Perception and Coherence – SOC; BC Coping Strategies |
| Dabrowska and Pisula (2010), Poland | 51 parents of children with ASD; 54 parents of children with DS; 57 parents of TD children | Mothers ASD 25–42 (M = 30.7), Fathers ASD 28–41 (M = 34.4); Mothers DS 25–43 (M = 32.8), Fathers DS 26–44 (M = 34.9); Mother TD 25–43 (M = 31), Fathers TD 27–40 (M = 34.6) |
2–6 | 1. Questionnaire of Resources and Stress (QRS) for Families with Chronically Ill or Handicapped Members-Short Form; 2.Coping Inventory for Stressful Situations |
The aim of this study was to examine stress profiles among parents of children with ASD and DS and to compare their reported stress to parents of TD children. Also, the study examines the relationship between parental stress and coping style. |
aA Pile up – Child Problems; aA Pile up – Financial Stress; aA Pile up – Limits on Family Opportunity; aA Pile up – Personal Burden; BC Coping Strategies; xX Family Adaptation – Family Disharmony |
| Daniels et al. (2017), Albania, Croatia, Bulgaria, Turkey | Caregivers of children with ASD.;758 [191 from Albania; 147 from Bulgaria; 146 from Croatia; and 274 from Turkey]; 603 mothers, 138 fathers and 16 grandparents or others caregivers | Not stated | 2.1–18.5 (M = 8.1) |
1. Characteristics of the Child with ASD; 2. Service Encounters; 3. Caregiver Needs and Perceptions |
The study aimed to obtain initial findings about caregiver needs, their perception about services and service utilization in Albania, Bulgaria, Croatia, and Turkey. |
aA Pile up – Financial problems; bB External support |
| Kasprzak et al. (2013), Poland | 31 mothers of children with Asperger syndrome and 31 mothers of TD children | Mothers ASD 31–52 (M = 40); Mothers TD 29–54 (M = 39) |
Not stated | 1. Polish Resiliency Assessment Scale; 2. Subjective Evaluation of Health Scale |
The aim of the study was to explore the relationship between assessment of health and resiliency among mothers of children with ASD and TD children |
BC Coping Strategies – Resiliency; xX Family Adaptation – Subjective Evaluation of Health |
| Lisak et al. (2017), Croatia | 1 mother and one mother-father dyad of children with ASD | Not specified for the parents of children with ASD | 3 years and 10 years | Qualitative interview | The purpose of this study was to explore parental experiences related to their child’s educational system |
bB External Support
|
| Milačić-Vidojević (2008), Serbia | 105 parents of children with ASD (including some couples) | 27–61 (M = 39.05) |
3 years and 2 months–18 years and 4 months | 1. Parenting Stress Index/Short Form | The study examines parent stress levels, and if there is any difference in stress in relation to gender and marital status, as well as child's characteristics. | xX Family Adaptation – Stress |
| Pejović-Milovančević et al. (2018), Serbia | 231 parents of children with ASD (167 mothers and 64 fathers) |
Not stated | M = 10.5 | 1. Affected Child Characteristics; 2. Service Encounters; 3. Parent/Caregiver Perceptions |
The study explored parents’ perception of support that they are receiving as well as their needs. |
aA Pile up – Financial Problems; bB External Support |
| Pisula (2007), Poland | 25 mothers of children with ASD and 25 mothers of children with DS | ASD 26–56 (M = 38); DS 30–58 (M = 40.44) |
4–20 | 1. Questionnaire of Resources and Stress (QRS) for Families with Chronically Ill or Handicapped Members | The study explored if stress profiles are different between parents of children with ASD and DS. |
aA Pile up – Child’s Problem; aA Pile up – Financial Stress; aA Pile up –Limits on Family Opportunity; aA Pile up – Personal Burden; aA Pile up – Excess Time Demand; cC Perception and Coherence –Pessimism; bB External support – Lack of Social Support; xX Family Adaptation – Poor Health/Mood; xX Family Adaptation – Lack of Family Integration |
| Pisula and Kossakowska (2010), Poland | 26 couples of children with ASD and 29 of TD children | Mothers ASD 26–47 (M = 34), Fathers ASD 26–48 (M = 36); Mothers TD 26–48 (M = 32), Fathers TD 26–50 (M = 35) |
ASD 3.7–5 (M = 5.12); TD 3–6.5 (M = 4.67) |
1. Orientation to Life Questionnaire (SOC-29); 2. Ways of Coping Questionnaire (WCQ) |
The purpose of this study was to explore the relationship between SOC and coping strategies, as well to see if the assessment of coping strategies and SOC are different between parents of children with ASD and parents of TD children |
cC Perception and Coherence – SOC; BC Coping Strategies |
| Pisula and Porębowicz-Dörsmann (2017), Poland | 202 parents (49 mother–father dyads of children with ASD and 52 mother-father dyads of TD children) | Mothers ASD M = 39.56, Fathers ASD M = 41.87; Mothers TD M = 39.94, Fathers TD M = 42.63 |
ASD 5–17 (M = 10.24); TD 5–17 (M = 10.21) |
1. Family Assessment Measure III; 2. Questionnaire of Resources and Stress for Families with Chronically Ill or Handicapped Members-Short form; 3. WHOQoL-BREF |
The aim of this study was to explore family functioning among parents of children with ASD in Poland, as well as the relationship between family functioning, quality of life, and stress. |
aA Pile up – Child’s problem; bB Internal Resources –Family Functioning; xX Family Adaptation –Personal Problems; xX Family Adaptation – Family Problems xX Family Adaptation – Quality of Life |
| Rudić et al. (2013), Serbia | 167 parents of children with ASD | M = 37.35 | Not stated | 1. Parenting Stress Index; 2. Childhood Autism Rating Scale |
The purpose of this study was to examine stress levels in parents of children with ASD. Also, the authors explored the correlation of stress in mothers with ASD symptom severity. |
aA Pile up – ASD Symptoms Severity; xX Family Adaptation – Stress |
| Schmidt et al. (2017), Slovenia | 25 families with children with IDD and 19 families with children with ASD | Mothers M = 40.74; Fathers M = 43.62 |
IDD M = 14.86; ASD M = 11.63 |
1. Family Quality of Life Survey–2006 (FQOLS-2006) (measures 9 domains: Health, Financial Wellbeing, Family Relationships, Support from Others, Support from Services for People with Disability, Influence of Values, Careers, Leisure, Community Interaction) |
The aim of this study was to examine quality of life among parents of children with ID and ASD and to compare their perceptions of family life domains. |
bB External Support – Support from Others; bB External Support – Support from Services; bB Internal Resources – Family Relationships; xX Family Adaptation – Health; xX Family Adaptation–Financial Wellbeing; xX Family Adaptation –Careers xX Family Adaptation–Leisure; xX Family Adaptation–Community Participation; xX Family Adaptation – Quality of Life |
| Tiba et al. (2012), Romania | 27 parents of children with ASD (22 mothers and five fathers) | 29–53 (M = 37) |
M = 10.3 | 1. Profile of Affective Distress Scale; 2. Automatic Thoughts Questionnaire; 3. Attitude Beliefs Scale - Short form; 4. Problem Behavior; 5. Positive Negative Emotions Parent Meta-Cognitive Beliefs Scale |
The purpose of this study was to explore the relationship between cognitive vulnerability factors and the experience of stress and positive emotions in parents of children with ASD. |
aA Pile up – Problem Behavior; cC Perception and Coherence – Automatic Positive and Negative Thoughts; cC Perception and Coherence – Irrational Beliefs; xX Family Adaptation – Stress |
| Troshanska et al. (2018), North Macedonia | 70 caregivers of individuals with ASD | Not stated | Not stated | 1. The Care-related Quality of Life instrument (CarerQoL) | The aim of this study was to explore caregivers’ experiences of living with the individual with ASD and if their quality of life changed after attending parent education programa |
aA Pile up – Financial Problems; bB External Support xX Family Adaptation – Quality of Life |
Note. M – mean, SD – standard deviation, ASD – autism spectrum disorder, TD – typically developing, DS – Down syndrome, CP – cerebral palsy, IDD – intellectual or developmental disability. In order to be consistent, we used ASD across this review, although some studies applied the terms autism, pervasive developmental disorder or Asperger syndrome.
aWe only report on Troshanska et al.’s pre-program data, as we excluded studies intervention data in our review.