Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies
Abstract Background Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers’ experiences of caring for their child with CCN and hi...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-02-01
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| Series: | BMC Pediatrics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12887-024-04567-8 |
| _version_ | 1797273251627401216 |
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| author | Roberta L. Woodgate Miriam Gonzalez Jacquie D. Ripat Marie Edwards Gina Rempel |
| author_facet | Roberta L. Woodgate Miriam Gonzalez Jacquie D. Ripat Marie Edwards Gina Rempel |
| author_sort | Roberta L. Woodgate |
| collection | DOAJ |
| description | Abstract Background Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers’ experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. Methods We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. Results One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. Conclusions In addition to documenting fathers’ active involvement in their child’s care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN. |
| first_indexed | 2024-03-07T14:40:51Z |
| format | Article |
| id | doaj.art-76b38a31845c4befbec29cb9c3b3f185 |
| institution | Directory Open Access Journal |
| issn | 1471-2431 |
| language | English |
| last_indexed | 2024-03-07T14:40:51Z |
| publishDate | 2024-02-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pediatrics |
| spelling | doaj.art-76b38a31845c4befbec29cb9c3b3f1852024-03-05T20:22:35ZengBMCBMC Pediatrics1471-24312024-02-0124111710.1186/s12887-024-04567-8Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologiesRoberta L. Woodgate0Miriam Gonzalez1Jacquie D. Ripat2Marie Edwards3Gina Rempel4College of Nursing, Rady Faculty of Health Sciences, University of ManitobaCollege of Nursing, Rady Faculty of Health Sciences, University of ManitobaCollege of Rehabilitation Sciences, Department of Occupational Therapy, Rady Faculty of Health Sciences, University of ManitobaCollege of Nursing, Rady Faculty of Health Sciences, University of ManitobaDepartment of Pediatrics and Child Health, Rady Faculty of Health Sciences, CE-208 Children’s Hospital, Health Sciences Centre, Max Rady College of Medicine, University of ManitobaAbstract Background Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers’ experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. Methods We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. Results One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. Conclusions In addition to documenting fathers’ active involvement in their child’s care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.https://doi.org/10.1186/s12887-024-04567-8FathersChildrenComplex care needsEthnographyArts-based methodsCanada |
| spellingShingle | Roberta L. Woodgate Miriam Gonzalez Jacquie D. Ripat Marie Edwards Gina Rempel Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies BMC Pediatrics Fathers Children Complex care needs Ethnography Arts-based methods Canada |
| title | Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies |
| title_full | Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies |
| title_fullStr | Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies |
| title_full_unstemmed | Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies |
| title_short | Exploring fathers’ experiences of caring for a child with complex care needs through ethnography and arts-based methodologies |
| title_sort | exploring fathers experiences of caring for a child with complex care needs through ethnography and arts based methodologies |
| topic | Fathers Children Complex care needs Ethnography Arts-based methods Canada |
| url | https://doi.org/10.1186/s12887-024-04567-8 |
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