Table 4.

Characteristics of the included studies

	Authors/Country of origin	Aim of study	Instruments/methodology/questions to ascertain positive aspect/Term used to report the positives	(N)	Parental demographics	Child characteristics	Main positive aspects reported				Quality Assessment risk of bias
Quantitative studies which reported only quantitative findings
1	Valentine et al. (1998) USA	The differences in African American and Caucasian mothers' experiences with their adult children with mental retardation and with service agencies	Modified burden and gratification scale for people with schizophrenia (Bulger et al., 1993) Measured both parental burden and gratifications Reports “gratifications”	71	Mothers only 13 Married (87%) Caucasian—60.6%(43), African American—39.4% (28)	Aged 22–55 years (mean age 33 years) Intellectual disability: Mild 32.4% Moderate 25.4% Severe 25.4% Profound 16.9%	Comparison of caregiver gratifications by race (T test scores)				Medium risk of bias
							Gratifications:	Caucasian	African American	p =
							Appreciation for your work	2.84	2.77	0.49
							Gives you pleasure	2.91	2.79	0.23
							Feel good about yourself	2.68	2.80	0.46
							Do a good job	2.45	2.81	0.02
							Feel closer	2.77	2.88	0.32
							Enjoy being with	2.87	2.96	0.19
							Want to care more than a sense of duty	2.74	3.00	0.19
2	Hastings et al (2002) United Kingdom	The associations between disability‐related maternal positive perceptions and the factors identified in previous family research as related to negative (i.e., stress) and positive (i.e., parental efficacy feelings)	Positive Contribution Scale (PCS), a subsection of the Kansas Inventory of Positive Perceptions (KIPP) (Behr et al., 1992) Scale measures the belief that the child with the disability has had a positive impact on the parent (1 = strongly disagree, 4 = strongly agree) Reports “positive perceptions”	41	Mothers only. Aged 30–59 years, Average age 41.40 years (SD 6.54) 36 (87%) married or cohabiting 19(46%) in paid employment 7% bachelor's degree, 46% no formal qualifications	N = 41 28 males, 12 females (one non‐response) 4–19 years, average age 11.9 years (SD3.88) “Children with learning disabilities”	The positive impact of the child itself (happiness and fulfilment) and its effect on the family in general (strength and family closeness) was positively predicted by the use of reframing coping strategies (p 0.001). Mothers reporting higher levels of caregiving demand reported more personal growth and maturity (p = 0.018) Reframing was also a positive predictor of positive effects on the mother herself (personal growth and maturity) (p = 0.035)				Medium risk of bias
3	Hastings, Beck, and Hill (2005) United Kingdom	1. Test the psychometric properties of the Positive Contributions Scale (PCS) to positive affect scale (PAS) 2. To compare perceptions of positive contributions reported by mothers and fathers	Positive Contribution Scale (PCS), a subsection of the Kansas Inventory of Positive Perceptions (KIPP) (Behr et al., 1992) Scale measures the belief that the child with the disability has had a positive impact on the parent (1 = strongly disagree, 4 = strongly agree) Reports “positive contributions”	200	142 families, 58 couples Mothers‐ 140 (70%) Mean age 39.42 years (SD7.33) 21% University education Father‐ 60 (30%) Mean age 42.08 years (SD6.98) 30% University education	N = 142 93 males 49 females 10.49 years average (SD4.01) Children with ID 22% (7) mild 59% (19) Moderate 13% (4) severe Rest undiagnosed 50% had additional physical disabilities	Mothers reported more positive perceptions than fathers on three of the scales: Learning through experience with special problems in life (p = 0.03) Source of strength and family closeness (p = 0.004) Expanded social network (p = 0.003) Fathers reported more positive perceptions than mothers on one scale: Source of pride and cooperation (p = 0.046)				Low risk of bias
4	Greer et al. (2006) Ireland	Four aims of which one relates to positive perceptions: Investigate whether behavioural and cognitive coping strategies predict levels of positive perceptions	Positive Contribution Scale (PCS), a subsection of the Kansas Inventory of Positive Perceptions (KIPP) (Behr et al., 1992) Scale measures the belief that the child with the disability has had a positive impact on the parent (1 = strongly disagree, 4 = strongly agree) Reports “positive perceptions”	36	Mothers only Aged 23–52 years (mean 37) 32 (89%) married 4 (11%) lone parents 58% homemakers, 11% unemployed, 34% in white collar jobs (47% of partners in white collar jobs) 11% no formal qualifications, 14% 3rd level qualifications	N = 36 n = 20 (56%) male, n = 16 (44%) female 5–8 years old (mean age 6 years) Intellectual disability: 31% Mild 53% Moderate 16% severe/profound	Agreement or strong agreement using self‐rated PCS scales on “the child is a…”: Source of happiness or fulfilment (78%) Source of strength and family closeness (75%) Source of personal growth and maturity (58%)				Medium risk of bias
5	Lakhani et al. (2013) Pakistan	The impact of caring for a child with mental retardation	Positive Contribution Scale (PCS), a subsection of the Kansas Inventory of Positive Perceptions (KIPP) (Behr et al., 1992) Scale measures the belief that the child with the disability has had a positive impact on the parent (1 = strongly disagree, 4 = strongly agree) Reports “positive impact”	54	Mothers only Age: 20–30 years (9%), 31–45 (63%) 46 years + (28%) 29% had a higher education degree 87% housewives	53% male 46% female Aged 6 and above. Mean age was 11.2 ± 2.62 years 54% ‐ mild to moderate mental retardation 46% severe retardation	Positive contribution subscales:	Mean	SD		Low risk of bias
							Learning through experience with special problems in life	3.39	0.19
							Happiness and fulfilment	3.23	0.21
							Strength and family closeness	3.17	0.26
							Understanding life's purpose	3.22	0.75
							Awareness of future issues	3.09	0.10
							Personal growth and maturity	3.00	0.30
							Expanded social network	2.43	0.55
							Career or job growth	2.56	0.22
							Pride and cooperation	2.44	0.23
6	Vilaseca et al. (2013) Spain	Positive perceptions, anxiety and depression among mothers and fathers of children with intellectual disabilities	Positive Contribution Scale (PCS), a subsection of the Kansas Inventory of Positive Perceptions (KIPP) (Behr et al., 1992) Scale measures the belief that the child with the disability has had a positive impact on the parent (1 = strongly disagree, 4 = strongly agree) Reports “positive perceptions”	60	Mother/father married couples Mothers: Age 30 58 years (mean age 43.7 years) 93% Spanish origin 18.3% completed high school 23.3% F/T employment, 30% P/T employment Fathers Age: 35–59 years (mean age 45.3) 91.7% Spanish origin 50% completed high school 81% in full‐time employment	N = 60 35 male 25 female 1–6 years (10%) 6–12 years 20% 12–19 years (70%) Intellectual disabilities: 31.7% mild ID 35% moderate ID 33.3% severe	Mothers reported more positive perceptions than fathers on three PCS subscales: Strength and family closeness (p < 0.04) Personal growth and maturity (p < 0.02) Career/job growth (p < 0.05)				Low risk of bias
Quantitative studies which reported both quantitative and findings from open‐ended questions/previous qualitative work
7	Scorgie et al (2001) Canada	Effective life management for families of children with Down's syndrome	Life management survey instrument (Scorgie et al., 1997) Parents ranked personal agreement/disagreement (1 = strongly disagree, 5 = strongly agree) for a range of transformational outcomes Reports “transformations”	53	39 mothers, 11 fathers, 2 foster parents, 1 guardian 84.9% dual parent homes	32 males 19 females Ages: 0–5 (9.8%) 6–12 (43.1%) 13–21 (25.5%) 21+ (21.6%) Mean 15 years All had Down's syndrome	Strategies identified as important or essential to effective life management: Reframing: Child brings traits such as joy, care, love of life and sensitivity towards others to their families and larger communities Developing skills to advocate on behalf of their child Effective parent characteristics: Personal traits: Maintaining a positive outlook, patience, willingness to grow and learn, determination (refusing to give up or persisting until an acceptable outcome is achieved) Personal beliefs/philosophy of life: “Life is what you make it,” having strong personal convictions, reliance on strong inner faith/religious convictions, belief in one's own inner strength Transformational outcomes: Personal transformations: Learned to speak out for their children, more compassionate towards others especially those in need, self‐empowerment, strength Relational transformations: Learned to see life from a different perspective, made a difference in the life of another person through advocacy Perspectival transformations: Learned what is really important and valuable in life and to cherish life, accept others non‐judgementally, help others				Medium risk of bias
8	Foster et al. (2010) USA	Demographic and psychosocial factors associated with well‐being including benefit finding	Modified benefit finding scale (Mohr et al., 1999) Open‐ended question: Do you have any other thoughts about your experiences caring for your child diagnosed with Smith‐Magenis syndrome that you wish to share at this time? Reports “benefit finding”	112	Mothers (n = 97) 87% Mean age 41.36 years (SD 9.60 years), 93.8% Caucasian 3% Latino/Hispanic, 2% African American/Black, 1% Multiracial, 77.3% married 92.7% had attended college Fathers (n = 15) 13% Mean age: 42.07 years (SD 9.85 years), 100% Caucasian, 100% married 84.6% had attended college	Average age reported: Mothers: 12.91 years (SD = 9.04). Fathers: 11.73 years (SD = 7.08) Gender of child: Mothers: Female 56 (58%) Male 40 (41%) Fathers Female: 8 (53%) Male 7 (47%) Child attending special school? Yes 75% mothers, 93% fathers	Closer family relationships Mothers 51 (53%) fathers 9 (60%) Appreciating the preciousness of the child Mothers 83 (87%) fathers 12 (80%) Having a better perspective on life Mothers 81 (84%) fathers 12 (80%) Spiritual growth Mothers 63 (65%) fathers 4 (27%) Learning something about yourself (personal/emotional growth) Mothers 74 (76%) fathers 10 (67%) Of 112 participants, 73 (65%) wrote in the open‐ended question section, the most common theme discussed was benefit finding/acceptance/gratitude/personal growth (41%).				Medium risk of bias
9	Skotko et al. (2011) USA	Family attitudes towards persons with Down's syndrome	Developed and piloted own survey instrument Parents asked to rate their level of agreement with statements about parental feelings towards their child on a Likert scale (1 = strongly disagree, 7 = strongly agree). Open‐ended question asking parents to share life lessons learned from their son or daughter who has Down syndrome Reports “positive parent outlook”	1989	63% mothers, 37% fathers – 88% married Average age 46.4 years (SD11.0) White 89%, Black/African American 2% Asian 2%, Other 7% “majority received a college/university degree or higher”	N = 1973 1,085 Males 888 Females <5 years – 33% 5–10 years 22% 10–15 years 15% 15–20 years 10% 20−25 years 8% 25−30 years 5% >30 years 7% All have Down's syndrome	Positive themes identified (N = 943):				Low risk of bias
							Personal self‐growth	48%
							Patience	35%
							Acceptance/Respect	24%
							Love	24%
							Joy	13%
							Everyone has gifts/we're all more alike than different	12%
							Lessons on blessings/faith/God	11%
							Don't take anything for granted	8%
							Kindness/empathy	8%
							Perseverance	7%
							Learning to advocate	6%
							Learning how to be positive	5%
							Tolerance	5%
Quantitative studies which reported only findings on positive aspects from open‐ended questions:
10	Kenny and McGilloway (2007) Australia	Assessing levels of caregiver strain, describing the practical day to day aspects of caring and the extent and nature of informal and formal support, exploring coping strategies employed by carers	Carer's questionnaire (McGilloway et al., 1995) Two open‐ended subsections for parents to describe the positive and negative aspects of caring Reports “positive aspects”	32	24 (75%) females All married Aged 28–57 (mean age 44 years) ½ employed outside the home, most of remainder ceased employment to care for their child	N = 32 19 (59%) male 13(41%)female Aged 2–17 (mean age 11 years SD 3.94): Mild 7/32 Moderate 19/32 Severe 4/32 44% had additional physical disabilities	child had brought positive changes into the carers' lives which, in turn had helped them to cope better less judgemental less materialistic and selfish than before their child was born more open and honest more confident more appreciative of the “little things in life.” more optimistic laughed more				Medium risk of bias
11	Rapanaro, Bartu, and Lee (2008) Australia	Perceived negative and positive outcomes reported by parents in relation to particularly stressful events and chronic caregiving demands encountered in the period of their son/daughter's transition into adulthood	Not provided Open‐ended question: Parents were asked to describe the negative and positive outcomes associated with the chronic demands of caring for their son or daughter in the past 12 months Reports “benefits”	119	107 (90%) females Mean age 48.05 years 77% lived in a metropolitan area 34% university degree, 33% school certificate, 12% “other” training, 20% no formal qualifications	70 male 49 female Aged 16–21 years Intellectual disabilities: 58.8% Mild 33.6% Moderate 7.6% Severe/profound	(a) Of the 94 parents who reported experiencing a particularly stressful event 45.7% (n = 43) reported a positive outcome or benefit. Three categories were identified: Enhanced personal resources/personal growth of parent (38.6%) Improvement in social support/relationships (38.6%) Enhanced personal resources/personal growth of son or daughter (22.8%) (b) In relation to the chronic demands of caregiving 64.7% (n = 77) reported perceived benefits or positive outcomes, four categories were identified: Sense of fulfilment and pride (52.9%) Personal growth/enhanced personal resources (35.6%) Enhanced social network (6.9%) Absence of certain care demands (4.6%)
Pluralistic evaluation:
12	Grant et al. (1998) United Kingdom	Preliminary findings of two instruments new to the field of Intellectual disabilities used for measuring caregiving rewards and stress.	Carers Assessment of Satisfaction Index (CASI) (Nolan et al., 1996) Measured factors which are perceived as a source of satisfaction and how much satisfaction is equated with each plus semi‐structured interviews. Questions not provided. Reports “rewards”	120	71% mothers, 9% fathers, 14% both parents, 6% other relatives ½ aged < 45 years, 45–64 (34%), >65 years (15%) 73% cohabitating, 27% single parents	½ children < 19, ½ >20 years 76 (63%) male 44 (37%) Female 51% unable to utter words or a few words only. 79% were able to make their needs known at least to family members	Rewards emerging from the interpersonal dynamic (carer and the child) Pleasure seeing relative happy, maintaining dignity of relative, expression of love, brought closer to relative, closer family ties, appreciation from others, relative does not complain Rewards derived primarily from the intrapersonal orientation of the carer: seeing needs attended to, seeing relative well turned out, knowing I've done my best, altruism, provides a challenge, feel needed/wanted, test own abilities, fulfilling duty, providing a purpose in life, stop feeling guilty Rewards stemming from a desire to promote a positive outcome for the person with ID: Help relative overcome difficulties, see small improvements in condition, keep relative out of institution, give best care possible, help reach full potential, developed new skills/abilities, less selfish, widened interests.				Medium risk of bias
Qualitative studies:
13	Stainton and Besser (1998) Canada	Positive impacts [of caregiving]	Semi‐structured group interviews and constant comparative methods of analysis (Glaser & Strauss, 1967). “What are the positive impacts you feel your son or daughter with an intellectual disability has had on your family?” Reports “positive impact”	15	6 (40%) fathers 9 (60%) mothers Aged < 25–70. Mean age 50 years	Aged 0 to 35 years 7 (63%) female 4 (27%) male Self‐ reported degrees of intellectual disability ranged from low to high	Source of joy and happiness Increased sense of purpose and priorities Expanded personal and social networks and community involvement Increased spirituality Source of family unity and closeness Increased tolerance and understanding Personal growth and strength Positive impacts on others/community				Of Quality
14	Kearney and Griffin (2001) Australia	The experiences of parents who have children with significant developmental disability	A qualitative interpretative research approach underpinned by hermeneutic phenomenology (Van Manen, 1990) “Can you tell me your experience of living with (name of disabled child)” Reports “joys”	6	2 mother/father pairs and 2 mothers Two couples, 1 divorced, 1 mother separated	Age range 3–6 years 3 girls, 1 boy All children had major cognitive impairments	Child as a source of joy, love optimism Parents have become better people Have become stronger in the face of adversity New perspectives following overwhelming changes in personal beliefs and values				Of Quality
15	Scallan et al. (2011) Ireland	Exploration of the impact that a person with Williams syndrome can have on the family.	Semi‐structured interviews and a thematic analysis (Flick, 1998) Question not specified other than including the positive aspects of raising a child with Williams syndrome Reports “positive impact”	21	6 mother and father pairs, remainder mothers	N = 21 13 males 8 females Aged 4–43 years Mean age 20.9 years (SD 10.1 years) All have Williams syndrome	Positive Impact on siblings Joy brought by the person with WS Changed outlook on life Personal development Rewarding experience Friendships with other parents Company for parents Brings family closer				Of Quality
16	King et al. (2011)	To examine the nature of the benefits seen by parents of children with ASD and Down syndrome (differences between children at elementary and high school)*	Two semi‐structured interviews 2–5 months apart using a grounded theory approach (Strauss & Corbin, 1998) “Have your family values, priorities and worldviews changed over time?” “What sort of things do you celebrate?” Reports “benefits”	14	6 mother and father pairs 2 single mothers Aged mid−30s to mid−50s 6 couple's major urban homeowners. 2 major urban renters 3 finished high school, 9 college, 2 university	N = 8 3 boys, 1 girl ‐ Elementary school (ages 6–8 years) 3 boys, 1 girl ‐ High school (15–17 years) All have Down syndrome	Parental level Appreciation of the child for who they are Celebration of what the child can do Family level Appreciation of the family itself Appreciation of new opportunities Appreciation of learning for siblings and family Societal level Learning about differences, diversity and community Recognition of the capabilities of people with disabilities Benefits for other families of children with disabilities				Of quality
17	Kimura and Yamazaki (2013) Japan	Exploration of the lived experience of Japanese mothers who have delivered multiple children with intellectual disabilities	Semi‐structured interviews and interpretative phenomenological analysis (Smith, Flowers, & Larkin, 2009). “Please tell me your experiences of taking care of multiple children with intellectual disabilities” Reports “positive experiences”	10	Mothers only, All married Aged 35–50 years (mean age 41.7 years) 80% homemakers, 20% worked part time	N = 20 6 males, 4 females Aged 3 – 18 years (mean age 11.5 years) 8 males, 2 females Aged 0–13 years (mean age 7.4 years) All have intellectual disability	Parents were found to alter their perceptions about life by searching for positive aspects of caring. These came from three sources: Themselves: Provided them with confidence and optimism to overcome difficult situations, confronting each challenge, life has a meaning, Others: The importance of social/family support The children with intellectual disabilities: Finding positive features in their children and recognizing them as “treasures.” This metaphor was expressed with feelings such as grateful, cute, pleasure and participants looked back on their own lives and felt thankful and happy.				Of Quality
18	Thompson et al. (2014) United Kingdom	The caregiving impact of those who support a family member with intellectual disability and epilepsy.	Anonymous qualitative online survey comprised of twelve open‐ended questions exploring respondents' views on the needs of individuals with intellectual disability and epilepsy. Thematic analyses (Braun & Clarke, 2006) “In your experience how does having epilepsy and intellectual disability affect family life? What are the problems? What helps?” Reports “positive experiences”	42	No demographic details collected	No demographic details collected	The “positive impact” was identified as one of four thematic groupings: Close families: Close/loving family Family respond kindly to child “Few problems” [occasionally respondents indicated that they had few problems with care] Acceptance of/adaptation to limitations by siblings Personality shining Supporting others: Meeting/helping other families Siblings more patient/considerate people Involvement in activism Developed empathy for others Changed perspectives: Realized what is important in life Less paranoid about development of normal siblings Grateful for what they have				Lower quality
19	Beighton and Wills (2016) United Kingdom	Exploration what parents perceive to be the positive aspects of parenting their child with intellectual disabilities	Semi‐structured interviews and a thematic analysis (Braun & Clarke, 2006) “Can you describe to me in which ways [child's name] has had a positive impact on you or your family?” Reports “positive aspects”	19	14 mothers, 5 fathers Age range 29 – 68 years 58% Caucasian 58% married (n = 11) 37% retired (n = 7), 32% full‐time carers (n = 6) 19% Employed (n = 3), <1% Full‐time student (n = 1), 11% Unemployed (n = 2)	N = 19 42% Female (n = 8) 58% Male (=11) Age range 7–43 years Mild to severe intellectual disabilities	Seven key themes identified across all parents irrespective of gender or age of the child: Increased personal strength Changed priorities Greater appreciation of life The child's accomplishments Increased spirituality/Faith More meaningful relationships with others The positive effect the child has on others				Of Quality
Mixed methodology
20	Adithyan et al (2017) Southern India	Impacts on the caregivers of children with intellectual disability	National Institute for the Mentally Handicapped ‐ Disability Impact Scale (Peshawaria, 2000). Scale was administered to study the negative impacts only. Positive impacts were ascertained from focus groups and in‐depth interviews. Type of thematic analysis undertaken not provided “What were the good changes that have happened to you since this child came into your life?” Reports “positive impacts”	22	21 Mothers, 1 Father Mean age of parents 40.5 years	N = 22 68% Males “Most children aged > 10 years” 62% of children were diagnosed with “multiple disabilities,” most often cerebral palsy (30%) along with intellectual disability	Three main areas identified: Increased self‐esteem Strengthening of family ties Increased social responsibility				Low risk of bias
Case study
21	Durà‐Vilà et al. (2010) United Kingdom	Explore how the unexpected experience of an unusual offspring is attributed to sacred religious meaning	Semi‐structured face‐to‐face interviews undertaken to produce two illustrative case reports Reports “gains”	2	Two mothers, one father	One boy with Down's syndrome aged 16 One girl with severe intellectual disabilities aged 9	Child brings meaning to life God sent child because mother needed him Blessing from God Strengthened marriage We love her so much Brings us good things, a good luck charm				Of quality
Retrospective review
22	Wikler et al. (1983) USA	The author is reporting a previously discounted “positive” finding from a study they had undertaken which explored adjustment in families with a mentally retarded child (Wikler et al., 1981)	Original study ‐ Questionnaire survey Reports “strengths”	32	No details provided	No details provided	75% (n = 27) of parents reported they had become “stronger,” of these 46% (n = 12) felt “much stronger”				(Original study ‐ medium risk of bias)