Table 3.
Characteristics of the studies
| Author(s) | Title | Location | Sample | Long‐term health condition |
|---|---|---|---|---|
| Balling32 | Hospitalized children with chronic illness: parental care giving needs and valuing parental experience | USA | 50 caregivers: parents and foster carers (48 women) |
Conditions resulting in home enteral or parenteral nutritional Children 8–21 years |
| Bowes26 | Chronic sorrow in parents of children with type 1 diabetes | UK | 17 parents (10 mothers) |
Type 1 diabetes Children 9–23 years |
| Callery33 | Qualitative study of young people's and parents' beliefs about childhood asthma | UK | 25 dyads of young people and main carers (mainly mothers) |
Asthma Children 9–6 years |
| Cashin34 | The lived experience of fathers who have children with asthma: a phenomenological study | Canada | 8 fathers |
Asthma Children aged 7–11 years |
| Dickinson35 | Within the web: family–practitioner relationship in the context of chronic illness | New Zealand |
10 families (parents and children, number of mothers/fathers not provided) 12 health‐care practitioners |
Conditions resulting in child requiring home care interventions Children 9 months–14 years |
| Fawcett36 | Parents responses to health services for children with chronic conditions and their families: a comparison between Hong Kong and Scotland | China/UK | 105 parents (details not provided) |
Conditions requiring on‐going care Children under 15 years of age, range not included |
| George27 | Chronic grief: experiences of working parents and children with chronic illness | Australia | 11 parents (8 mothers) |
Condition as a result of neurological problems Children 2–8 years |
| Gibson37 | Facilitating critical reflection in mothers of chronically ill children | Canada | 12 mothers |
Condition as a result of neurological problems Children 11 months–16 years |
| Goble38 | The impact of a child's chronic illness on fathers | USA | 5 fathers |
Conditions requiring on‐going care Children aged 3–6 years |
| Green59 | ‘We're tired not sad': benefits and burdens of mothering a child with a disability | USA | 110 participants (predominately mothers, numbers not provided) |
Condition as a result of neurological problems Average age 5 years, range not reported |
| Heaton39 | Families' experiences of caring for technology dependent children at home | UK | 75 participant (34 mothers, 12 fathers 13 children, 15 siblings, 1 grandparents) |
Conditions resulting in technology dependent child Children 4–18 years |
| Hewitt‐Taylor40 | Children who have complex health needs: parents' experiences of their child's education | UK | 14 parents (12 mothers) |
Conditions requiring on‐going care Children 18 months–18 years |
| Hovey41 | The needs of fathers parenting children with chronic conditions | USA | 99 fathers (48 living with child with a chronic condition, 51 fathers of well children) |
Conditions included cancer, cystic fibrosis, juvenile arthritis Children's ages not reported |
| Hovey42 | Fathers parenting chronically ill children: concerns and coping strategies | USA | 48 fathers |
Conditions included cancer, cystic fibrosis, juvenile arthritis Children's ages not reported |
| Johnson28 | Mother's perceptions of parenting children with disabilities | USA | 10 mothers |
Conditions included cerebral palsy, hydrocephalus, spina bifida Children 3–10 years |
| Kirk43 | Parent or nurse? The experience of being a parent of a technology dependent child | UK | 33 parents (23 mothers) |
Child technology dependent Children up to 18 years |
| Knafl44 | Childhood chronic illness: a comparison of mothers' and fathers' experiences | USA | 93 parents (50 mothers) |
Conditions requiring on‐going care Children 7–14 years |
| Lauver45 | Parenting foster children with chronic illness and complex medical needs | USA | 13 foster parents (10 women) |
Multiple care needs such as gastric tube feeding, central line care, colostomy care, intravenous therapies Children 8 months–20 years |
| MacDonald46 | Parenting children requiring complex care: a journey through time | UK | 43 participants: 26 carers (15 mothers, 4 fathers, 4 grandmothers, 3 grandfathers) 13 nurses, 4 social workers | Multiple care needs such as complex feeding and medication regimes, bowel care, catheterization, oxygen therapy Age of children not reported |
| Maltby29 | The parenting competency framework: learning to be a parent of a child with asthma | USA | 15 mothers | Asthma Age of children not reported |
| Marshall47 | Living with type 1 diabetes: perceptions of children and their parents | UK | 10 families (child/mother predominantly and child/mother/father) |
Type 1 diabetes Children 4–17 years |
| Miller48 | Continuity of care for children with complex chronic health condition: parents perspectives | Canada | 66 caregivers (mothers, fathers, grandparents) (45 women) |
Conditions requiring on‐going care Children 5–13 years |
| Monsen49 | Mothers experiences of living worried when parenting children with spina bifida | USA | 13 mothers |
Spina bifida Children 12–18 years |
| Mulvaney30 | Parents' perceptions of caring for a adolescents with type 2 diabetes | USA | 101 caregivers (mothers, fathers, grandparents) (89 women) | Type 2 diabetes Young people 12–21 years |
| Notras50 | Parents' perceptions of health‐care delivery to chronically ill children during school | Australia | 161 parents (85 mothers) |
Care needs included gastrostomy feeding, giving medications, blood sampling Children 5–14 years |
| Nuutila51 | Children with a long‐term illness; parents' experiences of care | Finland | 11 parents (10 mothers) |
Conditions requiring on‐going care Children 1–9 years |
| Ray52 | Parenting and childhood chronicity: making the invisible work visible | Canada | 43 parents (30 mothers) |
Requiring at least one care intervention Children 15 months–16 years |
| Ray53 | The social and political conditions that shape special‐needs parenting | Canada | 43 parents (30 mothers) |
Requiring at least one care intervention Children 15 months–16 years |
| Sallfors54 | A parental perspective on living with a and chronically ill child: a qualitative study | Sweden | 22 parents (16 mothers) |
Juvenile arthritis Children 7–17 years |
| Sanders55 | Parents' narratives about their experiences of their child's reconstructive genital surgeries for ambiguous genitalia | UK | 10 parents (7 mothers) |
Ambiguous genitalia Children's ages not reported |
| Sullivan‐Bolyai56 | Fathers' reflections on parenting young children with type 1 diabetes | USA | 15 fathers |
Type 1 diabetes Children 2–8 years |
| Swallow31 | Mothers' evolving relationship with doctors and nurses during the chronic illness trajectory | UK | 29 mothers of children |
Vesicouretic reflux Children newborns–8 years |
| Waite‐Jones57 | Concealed concern: fathers' experiences of having a child with type juvenile idiopathic arthritis | UK | 32 participants (8 mothers, 7 fathers, I grandmother, 8 children, 8 siblings) |
Juvenile arthritis Children up to 18 years |
| Wennick58 | Families lived experiences 1 year after a child was diagnosed with type 1 diabetes | Sweden | 32 families (11 mothers, 10 fathers, 11 children) |
Type 1 diabetes Children 9–14 years |