Table 4.
Design of the studies
| Author | Aim | Recruitment | Theory | Methods | Key findings |
|---|---|---|---|---|---|
| Balling32 | Explore parents participation in care when a child with a chronic illness is hospitalized | Convenience | Family systems theory | Mixed method survey. Measures: family profile inventory, parent experience scale analysed by descriptive statistics Open questions analysed by content analysis |
Higher quality of care provide at home Nurses workloads limited care delivery Child not always incorporated in care Parents want greater involvement in care Professionals' struggle to incorporate parents expertise into ward practices |
| Bowes26 | Explore parents' experiences of living with a child with type 1 diabetes | Convenience | Grieve and loss Adaptation and change | Qualitative study. Interviews analysed by developing codes and categories |
Parents' grief following diagnosis is on‐going Acute illness episodes, hospitalization, change in treatments, development changes evoked a resurgence in grief Emotional support was not always available |
| Callery33 | Explore the beliefs of young people with asthma and their carers about managing their condition | Purposeful | None | Qualitative study. Interviews analysed using constant comparison method associated with grounded theory |
Minimizing the consequences of asthma is a trial and error process Accepting a tolerable levels of symptom control reflected competing demands The impact on asthma on everyday life was variable and unpredictable |
| Cashin34 | Explore fathers experiences of caring for a child with asthma | Convenience | None | Qualitative phenomenological study. Interviews analysed using Van Manen's approach to phenomenology |
Relief in knowing the diagnosis Need to gain knowledge about the condition and treatment options Living with concerns is constant, being vigilant to illness symptoms is part of everyday life Expertise gained through knowledge |
| Dickinson35 | Explore parent–professional relationships in families living with a child with chronic illness | Convenience | Family‐centred care | Qualitative phenomenological study. Group interviews analysed using Caelli's approach to phenomenology |
Families enter a complex web of care with few choices in services and practitioners Tensions occur because of differences between professionals' working practices Moving between practitioners and services is disruptive |
| Fawcett36 | Explore parents' experiences of health‐care support in children with a chronic illness across two cultures | Convenience | None | Mixed methods descriptive study. Self‐developed questionnaire analysed using descriptive statistics Data analysis for interviews not described |
Importance of nutrition was significant in Hong Kong but not UK cultures Expectations health professional would provide support was specific to UK culture Both cultures wanted more information than provided and to participate in care decisions |
| George27 | Explore parents' experiences of chronic grief in children with chronic illness | Purposeful | Grief and chronic sorrow | Qualitative phenomenological study. Interviews analysed using Van Manen's approach to phenomenology |
Range of emotions on receiving the diagnosis and recur at times of uncertainty Chronic grief resulted in sadness which increased as the condition progressed Satisfaction in dealing with professions was variable |
| Gibson37 | Exploration of empowerment of mothers living with their child with a chronic illness | Convenience | Empowerment | Qualitative study based on feminist inquiry. Data collection included participant observation and in‐depth interviews Data analysis is unclear |
Initial frustration and disbelief are replaced with accepting the situation Critical reflection enabled mothers to develop an awareness of their own strengths and resources and own values and goals Mothers developed confidence in their own abilities to care for the child |
| Goble38 | Explore fathers' experiences of caring for a child with a chronic illness | Convenience | None | Qualitative study based on phenomenology. Interviews analysed using Van Manen's approach to phenomenology |
Financial impacts strained family life Fathers missed previous social activities Relationships with partners were supportive and strong but parents had no time alone Fathers filled the gap in becoming the main care giver to siblings Fathers worried about the child's future |
| Green59 | Explore the social experiences of mothering children with disabilities | Convenience | None | Mixed methods survey. Quantitative measure related to stigma and care giving burdens, range of statistical tests applied Analysis not described for qualitative interview data |
Mothers' lives are emotionally complex, they developed confidence but care giving was time consuming, expensive and physically exhausting Mothers valued achievements in the child Socio‐cultural constraints and stigma associated with disability added to the burden of caring |
| Heaton39 | Explore families' experiences of caring for a technology dependent child | Purposeful | Social construction of life round multiple temporalities | Qualitative study. Interview data analysed using the framework approach |
Family routines were influenced by the type of equipment and duration of treatments Considerable time committed to providing care which was often incompatible with continuing school/work and maintaining a social life |
| Hewitt‐Taylor40 | Explore parents' experiences of meeting the education needs of their child with a complex health need | Convenience | None | Qualitative study. Interview data analysed using qualitative content analysis |
Pre‐school education is limited for children with complex needs Finding the right school is complex, added difficulties related to Statement of Special Needs procedures Effort of learning for the child was challenging and exacerbated by missing school because of acute illness episodes and attending health appointments |
| Hovey41 | Compare the needs of fathers of chronically ill children to fathers of well children | Convenience | None | Quantitative survey. Fathers' needs measured using the Hymovich Family Perceptions Inventory Analysis used descriptive statistics |
Fathers of chronically ill children have more concerns than fathers of well children in relation to family health matters and the impact of caring routines on their partner than fathers of well children Similarities between the two groups related to fathers coping with family issues and general beliefs about their lives |
| Hovey42 | Identify concerns and coping strategies of fathers of chronically ill children | Convenience | Roy's nursing models of adaptation and change | Quantitative survey. Coping and concern identified from Hymovich Family Perceptions Inventory Analysis used descriptive statistic |
Fathers' perceived family had extra demands due care‐giving burdens, which mainly fell to mothers Fathers were concerned about the child's health Time with their partner was limited A range of coping strategies were used such as gaining information and problem solving in relation to managing their concerns |
| Johnson28 | Explore parents' experiences of parenting children with physical disabilities | Convenience | None | Qualitative study based on grounded theory. Interview data analysed using grounded theory method of constant comparison |
Mothers lived in the present to meet the child's needs but relived the past as grieving continued Mothers treated the child as normal while securing services because the child is not normal Mothers dealt simultaneously with the child's and their own issues and feelings |
| Kirk43 | Explore parents' experiences of caring for their technology dependent child | Theoretical | Social constructs of parenting | Qualitative study based on grounded theory. Interview data analysed using grounded theory method of constant comparison |
Home is dominated by medical equipment and the frequent presence of health‐care workers Parents caring role dominated their parenting role Parents differentiated themselves from health workers because care giving was interwoven into their lives with no respite and emotionally draining |
| Knafl44 | Compare mothers' and fathers' views about living with a child with a chronic illness | Purposeful | None | Mixed method study. Data from family function, mood status measures were analysed using descriptive and inferential statistics. Interview data analysis using grounded theory constant comparison |
Parents develop a shared view of the illness, its management and impact on family life, which helped family adjustment For some parents perspectives differed with mothers more likely to emphasize the negative effects of the child's illness on the family compared with fathers |
| Lauver45 | To understand the experiences of foster parents caring for children with complex needs | Purposeful | None | Qualitative study based on phenomenology. Interviews analysed using Van Manen's approach to phenomenology |
Foster parents were highly commitment to meeting the child's needs and learned about these in advance of their commitment Foster parents recognized the need for support but support provision was variable Foster parents experienced a deep sense of loss when their time as a foster parents ended but perceived the experience as life changing |
| MacDonald46 | To describe the care trajectory of children with complex needs | Purposeful | None | Qualitative study based on ethnography. Interviews, participant observations, eco‐maps and documentary review were coded, categorized and interrogated to find connections across data |
Caring processes began at birth and continued throughout infancy and into adulthood Parents needs changed in relation to the child's stage of development, condition changes, family circumstances and parents age Respite care was important and the need for respite changed over time suggesting regular review with health‐care professionals was required to ensure resources matched parents needs |
| Maltby29 | Describe and explore the daily life of mothers of children with asthma | Sampling strategies are not described | None | Qualitative study based on phenomenology. Interviews analysed using Colaizzi's stages of phenomenology |
Mothers' parenting competency and identity was challenged as a result of the child's condition Uncertainties about their own abilities and managing the condition existed Mothers' learned to acknowledge their child's condition and adjusted to meet their child's needs |
| Marshall47 | Explore children and their parents' experiences of living with type 1 diabetes | Purposeful | None | Qualitative study based on phenomenology. Interviews analysed using Van Manen's approach to phenomenology |
Families have to make sense of the condition Transition to becoming independent caused tensions between children and parents, relationships and attachments were challenged Parents' grief was on‐going because of perceived losses, disruption, changes to established routines |
| Miller48 | Explore parents' experiences of care across services for children with complex needs | Purposeful | None | Qualitative study. Interview data analysed by the framework approach |
Effective communication was integral to achieving continuity of care Compartmentalization of services inhibited continuity of care, parents assumed the role of co‐ordinator Consistent care providers were valued by parents because of their knowledge of the child |
| Monsen49 | Explore mothers' experiences of living with a child with spina bifida | Convenience | None | Qualitative study based on phenomenology. Interviews analysed using Van Manen's approach to phenomenology |
Mothers had on‐going worries about the child and family's health and worried about not coping Mothers were anxious the child would not fit in with peers and gain independence Mothers' struggled with the daily complexities of care |
| Mulvaney30 | Explore parents' experiences of living with adolescents with type 2 diabetes | Convenience | None | Qualitative study. Focus group data were analysed using the framework approach |
Role modelling had positive and negative impacts on adolescents self‐management of their diabetes Parenting skills impacted on adolescents self‐care Maintaining treatment was challenging Environment (clinic, home, school) influenced health behaviours, and the development stages of adolescence amplified consequences of diabetes |
| Notras50 | Explore parents' experience of health‐care support for children with chronic illness during school | Convenience | None | Mixed method survey. Questionnaire analysed using descriptive statistics, final themes developed using qualitative content analysis |
Continue care regimes was difficult and the child's needs were not always met in school Parents' perceived teachers did not have the skills or training to meet their child's health needs Parents were not supported when they provided health care for their child during school hours |
| Nuutila51 | Explore parent‐ professional relationships with families with a child with chronic illness | Purposeful | None | Qualitative study. Interview data was analysed using qualitative content analysis |
Information provision was inconsistent Information was needed across the illness trajectory Professionals lack of appreciation of parents experiences, constant changes in professional challenged parent–professional relationships |
| Ray52 | To validate a model designed to describe the work relating to parenting a child with chronic illness | Purposeful | None | Qualitative study based on phenomenology. Interviews analysed using thematic analysis |
Parents need to master technical care and monitor illness symptoms Parents' compensated for the child's lack of abilities and created opportunities for the child Securing services required parents to ‘work' the health, social and education systems Effort was required to support siblings and maintain family relationships |
| Ray53 | To describe the social and institutional factors that affect families living with a child with a chronic illness | Purposeful | Gidden's theory of social and structural events that shape actions | Secondary analysis of interview data.52 Interviews were analysed using thematic analysis |
Parents' perceived their role of caring for the child was influenced by professional attitudes, information provision, and available services Other influences on families caring for a child with a long‐term condition included the feminization of care and societal perceptions of disabilities |
| Sallfors54 | Explore parents' experiences of living with their child with juvenile chronic arthritis | Theoretical | None | Qualitative study based on grounded theory Interview data analysed using grounded theory method of constant comparison |
The unpredictability of the child's symptoms resulted in anxiety, parental over protection and watchfulness Emotional challenges related to uncertainties about parenting skills and communication with professionals On‐going adjustment as child's condition changed and new demands were balanced with every‐day life |
| Sanders55 | Explore parents' experiences of their child's reconstructive surgery for ambiguous genitalia | Purposeful | None | Qualitative narrative study. Data obtained through in‐depth interviews and analysed using a narrative framework |
Parents' experiences were shaped by the conditions timeline, gender and identity issues Expectations of healthy child were challenged Parents' felt vulnerable Parents had to make a range of complex decision, which were overwhelming |
| Sullivan‐Bolyai56 | Explore fathers' experiences of living with a child with type 1 diabetes | Purposeful | None | Qualitative study based on naturalistic inquiry. Interview data was analysed using qualitative content analysis |
Fathers' experience grief on hearing the diagnosis but also focused on meeting the child's needs Fathers wanted to learn about the condition and treatments Child's condition was constantly in the background Fathers recognized mother's care responsibilities, but felt they were co‐partners in the child's care |
| Swallow31 | Explore the relationship between parents and health professions when a child's has a chronic illness | Theoretical | Illness trajectory model | Qualitative study based on grounded theory. Interview data analysed using framework approach |
Mothers needed to develop effective relationships with health‐care professionals which was a continual source of stress Building effective relationships was reliant on mutual respect and good communication particularly early in their child's illness |
| Waite‐Jones57 | Explore fathers' experiences of caring for their child with juvenile idiopathic arthritis | Purposeful | None | Qualitative study based on grounded theory. Interview data analysed using grounded theory method of constant comparison |
Fathers described a range of losses in relation to their ability to maintain a normal family environment which was exacerbated by comparisons with fathers of healthy children The amount of care their ill child required resulted in fathers feeling that they did not spend quality time with their ill child |
| Wennick58 | Explore families' experiences of living with a child with type 1 diabetes | Convenience | None |
Qualitative study based on phenomenology. Interviews analysed using Van Manen's approach to phenomenology |
Families' perceived their lives to be ordinary but different to before the diagnosis Children did not feel their lives were particularly difficult but were frustrated in relation to being healthy but also ill, feeling independent yet supervised, confident yet insecure Parents worried about possible treatment complications |