Table 1.
Overview of studies included.
| Study 1st author; year |
Study purpose | Sample 1) Families (n, respondents) 2) Children (n, age range, ID level, ID percentage) 3) Country |
Method 1) Design 2) Measure |
Family theory 1) Concept 2) Framework |
Quality score Quantitative, max 13 Qualitative, max 14 |
|---|---|---|---|---|---|
| Ajuwon, 2012 | To analyse FQoL of families that have a child with ID and the relationship between families' life experiences and government policy and provision of services. | 1) 80; main caregivers (mothers 98%) 2) 80; m = 12,3/sd = 7.85; NR; 100% 3) Nigeria |
1) Mixed method; cross-sectional 2) Survey; FQOLS-2006 |
1) FQoL 2) FQoL framework |
11/13 |
| Balcells-Balcells, 2018 | To determine the impact of supports and partnership on FQoL | 1) 202; mothers (79%), fathers (18%), siblings (1%) 2) 202; 0–6; NR; NR 3) Spain |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) Structural equation model |
12/13 |
| Bertelli, 2011 | To study the correlation between QoL of adults with ID and relatives. | 1) 27; mothers (56%), fathers (22%), siblings (22%) 2) 27; 27–50; NR; 100% 3) Italy |
1) Mixed method; cross-sectional 2) Survey; FQoLS-2006 |
1) FQoL 2) QoL framework |
12/13 |
| Boehm et al., 2015 | To examine QoL among families of transition-age adolescents with ID and/or autims. | 1) 425; mothers (87%), fathers, (10%), grandparents (3%) 2) 425; 13–21; NR; 50% 3) USA |
1) Quantitative; cross-sectional 3) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
12/13 |
| Boehm, 2019 | To determine how parents of children with ID rate FQoL and what associations exist among FQOL and demographic factors, religiosity/spirituality, and relationships. | 1) 529; mothers (87%), fathers (8%), siblings (2%), grandparents 2%) 2) 529; 0–74; NR; 100% 3) USA |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
10/13 |
| Boelsma et al., 2018 | To analyse factors that influence support from others and interaction with the community. | 1) 25; parents (61%), siblings (26%), child with ID/DD (13%) 2) 7; 11–22; NR; 100% 3) Netherlands |
1) Qualitative; cross-sectional 2) Interview |
1) FQoL 2) FQoL framework |
13/14 |
| Brown et al., 2011 | To investigate families' perceptions of family functioning during placement of their child with multiple diagnoses at residential facilities. | 1) 25; parents 2) 23; 6–19; NR; 74% 3) UK |
1) Qualitative; cross-sectional 2) Focusgroup, interview |
1) FQoL 2) FQoL framework |
9/14 |
| Choi and Yoo, 2015 | To identify resilience factors affecting adaptation of families with children with Down syndrome. | 1) 125; mothers (94%), fathers 6%) 2) 126; 0–15, NR; 100% 3) Korea |
1) Quantitative; cross-sectional 3) Survey; Family APGAR |
1) Family adaptation 2) Patterson's conceptual framework of family resilience |
9/13 |
| Cohen et al., 2014 | To examine the contribution to FQoL of family support beliefs, assistance from family members, and moderating effects of ethnicity and income. | 1) 145; mothers (100%) 2) 145; 2–10; NR; 100% 3) USA |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL, Attitudinal familism 2) Attitudinal familism model |
11/13 |
| Davis and Gavida-Payne, 2009 | To investigate the relationship between parental perceptions and experiences with family-centred support and FQOL. | 1) 64; parents (mothers 95%) 2) 64; 3–5; NR; 6% 3) Australia |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) Family systems theory |
11/13 |
| Foley et al., 2013 | To explore relationships between FQoL, day occupations and activities of daily living of persons with Down syndrome. | 1) 150; families 2) 150; 16–30; NR; 100% 3) Australia |
1) Mixed method; cross-sectional 2) Survey; BCFQOL |
1) FQoL, Family functioning 2) NR |
10/13 |
| Gardiner et al., 2018 | To identify functional predictors of perceived impact of childhood disability among families of children with disabilities. | 1) 216; mothers (82%) 2) 216; 4–13; NR; NR 3) Canada |
1) Quantitative; cross-sectional 2) Survey; FICD |
1) Family impact 2) NR |
11/13 |
| Hsiao (2014) | To examine family demands,social support and family functioning in families rearing children with Down syndrome. | 1) 83; mothers (52%), fathers (48%) 2) 83; 4–17; NR; 100% 3) Taiwan |
1) Quantitative; cross-sectional 2) Survey; FAD |
1) Family functioning 2) NR |
11/13 |
| Hu et al., 2012 | To explore the perceptions of QoL of families a child with ID. | 1) 442; mothers (64%), fathers (31%), grandparents (3%) 2) 442; 0–18+; mild, moderate, severe; 100% 3) China |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
13/13 |
| Ignjatovic et al., 2017 | To examine the effects of newly introduced services on FQoL. | 1) 153; mothers (68%), fathers (21%), grandparents (4%), foster family member (7%) 2) NR; 3–42; NR; 19% 3) Serbia |
1) Quantitative; experimental longitudinal 2) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
12/13 |
| Isa et al., 2013 | To determine the level of family impact in terms of overall impact, parent health related QoL and family functioning on families of children with disabilities. | 1) 425; parents (96%), grandparents (3%), siblings, (1%) 2) 425; 2–18; NR; 73% 3) Malaysia |
1) Quantitative; cross-sectional 2) Survey; PedsQL FIM |
1) Family functioning, Family impact 2) NR |
11/13 |
| Lamb et al., 2016 | To investigate factors related to family functioning and adaptation in caregivers of individuals with Rett syndrome. | 1) 396; mothers (91%), fathers (8%) 2) 397; 1–50; NR; 100% 3) USA |
1) Quantitative; cross-sectional 2) Survey; FAM-III |
1) Family functioning 2) Thompson's transactional stress and coping model |
12/13 |
| Leonard e al., 2016 | To analyse family experiences during transition to adulthood for children with ID. | 1) 340; parents 2) 340; 15–29; NR; 100% 3) Australia |
1) Mixed method; cross-sectional 2) Survey; Questionnaire |
1) Family well-being 2) NR |
9/14 |
| Luijkx et al., 2017 | To explore parents' appraisals of the impact of raising a child with profound intellectual and multiple disabilities on family life. | 1) 56; mothers (66%), fathers (34%) 2) 56; 1–34; severe, profound; 100% 3) Netherlands |
1) Quantitative; cross-sectional 2) Survey; FICD |
1) Family impact 2) Family systems theory |
11/13 |
| Magill-Evans et al., 2001 | To determine life experiences of families with and without a child having cerebral palsy during adolescence. | 1) 162; mothers (39%), fathers (30%), siblings (31%) 2) 165; 13–15/19-23; NR; 25% 3) Canada |
1) Quantitative; cross-sectional with control group 2) Survey; FAD |
1) Family functioning 2) Ecological framework |
12/13 |
| Marchal et al., 2016 | To determine if FQoL and family functioning of parents of children with Down syndrome differ from reference parents. | 1) NR; mothers (65%), fathers (35%) 2) 88; 11–13; NR; NR 3) Netherlands |
1) Mixed method; cross-sectional 2) Survey; Dutch Family Questionnaire |
1) Family Functioning 2) NR |
11/13 |
| Mazaheri et al., 2013 | To examine the effects of caring for a child with Prader–Willi syndrome on the mother and siblings. | 1) 12: mothers (48%), siblings (52%) 2) 12; 1–27: NR; NR 3) USA |
1) Mixed method; cross-sectional 2) Survey; PedsQL FIM |
1) Family Functioning, Family Impact 2) NR |
9/13 |
| McConnell et al., 2014 | To investigate resilience in families raising children with disabilities and behavior problems. | 1) 538; mothers (88%), fathers (12%) 2) 538; 4–18; NR; 26% 3) Canada |
1) Quantitative; cross-sectional 2) Survey; FAD |
1) Family Functioning, Family Resilience, Family Adaptation, Family life congruence 2) Ecocultural theory |
12/13 |
| Mori et al., 2017 | To investigate parental wellbeing and FQOl of families with the CDKL5 disorder. | 1) 192; mothers (88%), fathers (11%) 2) 192; 0-34y; NR, 100% 3) Australia |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
10/13 |
| Neikrug et al., 2011 | To analyse the QoL of families raising a child with a disability. | 1) 103; mothers (81%), fathers (4%) 2) 103; 1–31; NR; 9% 3) Israël |
1) Mixed method; cross-sectional 2) Survey; FQOLS-2006 |
1) FQoL 2) FQOL framework |
11/13 |
| Povee et al., 2012 | To explore factors that predict functioning in families with a child with Down syndrome. | 1) 224; primary carers 2) 224; 4–25; NR; 100% 3) Australia |
1) Mixed method; cross-sectional 2) Survey; FAD |
1) Family Functioning 2) NR |
12/13 |
| Raspa et al., 2014 | To examine adaptation across 7 dimensions of family life of families with a child with Fragile X syndrome. | 1) 1099; mothers (89%) 2) 1394; 1–65; NR; NR 3) USA |
1) Quantitative; cross-sectional 2) Survey |
1) Family Adaptation, Family Empowerment, Family Life, FQoL 2) Conceptual model of family adaptation |
11/13 |
| Reilly et al., 2015 | To analyse parent experiences and factors associated in four of the most common neurogenetic syndromes. | 2) 381; mothers (89%) 1) 381; 4-19y; NR; NR 3) Ireland |
1) Quantitative; cross-sectional 2) Survey |
1) Family Functioning, Family Impact 2) NR |
7/13 |
| Rieger and McGrail, 2013 | To investigate whether coping humor predicts of family functioning in parents of a child with disabilities. | 1) 72: mother (82%), fathers (18%) 2) 72; 3–21; NR; NR 3) USA |
1) Quantitative; cross-sectional 2) Survey; FACES IV |
1) Family Functioning 2) Circumplex model |
12/13 |
| Rillotta et al., 2012 | To investigate the FQOL of families having a member with intellectual/developmental disabilities. | 1) 42; mothers (88%), fathers (2%); grantparent (2%), sibling (2%) 2) 42; 2–46; NR; NR 3) Australia |
1) Mixed method; cross-sectional 2) Survey; FQOLS-2006 |
1) FQoL 2) NR |
11/13 |
| Rodrigues et al., 2018 | To examine the impact of severe or profound ID on the FQoL of Brazilian families. |
1) 15; mothers (100%) 2) 15; 5–24; severe, profound; 100% 3) Brazil |
1) Qualitative; cross-sectional 2) Interview |
1) FQoL 2) Family system theory |
12/14 |
| Scherz et al., 2016 | To describe FQoL of families with a child with a severe disability. | 1) 70; parents/legal guardians 2) 70; 0–18; mild, moderate, severe; 21% 3) Israël |
1) Quantitative; cross-sectional 2) Survey; FQOLS-2006 |
1) FQoL 2) FQoL framework |
11/13 |
| Schippers and Van Boheemen, 2009 | To explore and describe positive practices by partners in supporting young adults with ID. |
1) 9; families 2) 9; 18–23; mild, moderate; 100% 3) Netherlands |
1) Qualitative; longitudinal 2) Survey; Questionnaire, interview |
1) FQoL 2) FQoL framework |
5/14 |
| Steel et al., 2011 | To provide an in-depth analysis of the social and professional domains of FQol from the perspective of parents. | 1) 25; mothers (96%), fathers (4%) 2) 27; 3–28; NR; 96% 3) Belgium |
1) Mixed method; cross-sectional 2) Survey; FQOLS-2006, interview |
1) FQoL 2) FQOL framework |
10/13 |
| Trute and Hiebert-Murthpy, 2002 | To develop an instrument to assess the impact of a child with developmental disabilities on parents and family | 1) 88; parents 2) 88; 5–12; NR; 29% 3) Canada |
1) Quantitative; longitudinal 2) Survey; FICD |
1) Family Functioning, Family Impact 2) Theory of primary appraisal |
11/13 |
| Vanderkerken et al., 2019 | To investigate the relation between a family-centered approach and FQOL in families with a child with ID receiving home-based support. |
1) 58; mothers (61%), fathers (39%) 2) 58; 1–19; mild, moderate, severe; 100% 3) Belgium |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
13/13 |
| Vitale, 2015 | To identify functioning of families with a child with Prader–Willi syndrome. | 1) 20; mothers (75%), fathers (25%) 2) 20; 2–17; NR; 100% 3) USA |
1) Qualitative; cross-sectional 2) Interviews |
1) Family Functioning 2) NR |
11/14 |
| Wakimizu et al., 2011 | To evaluate empowerment and related factors in families raising a child with developmental disabilities. | 1) 225; mothers (97%) 2) 225; 5–18; NR; 6% 3) Japan |
1) Quantitative; cross-sectional 2) Survey; FES |
1) Family Empowerment 2) NR |
12/13 |
| Wang et al., 2004 | To explore associations between family income and severity of disability and parents'satisfaction with FQOL | 1) 280; parents (95%), 2) 280; 0–8; NR; 6% 3) USA |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
12/13 |
| Wang et al., 2006 | To test whether mothers and fathers similarly view FQOL embodied in one measure. | 1) 107; parents (98%) 2) 107; 0–5; NR, 32% 3) USA |
1) Quantitative; cross-sectional 2) Survey; BCFQOL |
1) FQoL 2) FQoL framework |
11/13 |
Note. n = total number; NR = not registrated; FQoL = family quality of life; QoL = quality of life; ID = intellectual disability.