Description of sources—qualitative studies (ordered from earliest publication date)
| Lead author | Title | Country | Date | Aim |
| Brotherson25 | Quality of life issues for families who make the decision to use a feeding tube for their child with disabilities | USA | 1995 | To explore the issues families face in deciding whether to place a feeding tube |
| Katz26 | A cultural interpretation of early intervention teams and the IFSP: parent and professional perceptions of roles and responsibilities | USA | 1995 | To understand how members of an early intervention team involve families in developing of individual family service plans (IFSP). |
| Blue-Banning27 | Dimensions of family and professional partnerships: constructive guidelines for collaboration | USA | 2004 | To identify indicators of professional behaviour indicative of collaborative partnerships. |
| Brotherton28 29 | Mothers’ process of decision-making for gastrostomy placement | UK | 2012 | To explore mothers’ constructions of decision-making in gastrostomy feeding |
| Stille29 | Parent partnerships in communication and decision-making about subspecialty referrals for children with special needs | Canada | 2013 | To describe factors influencing parent–clinician partnerships in SDM when children with special healthcare needs are referred to subspecialists. |
| Zaal-Schuller30 | How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities | The Netherlands | 2016 | To compare experiences of parents and physicians involved in the end-of-life decision process |
| Buchanan31 | What makes difficult decisions so difficult?: An activity theory analysis of decision-making for physicians treating children with medical complexity | Canada | 2020 | To first understand the complexity of the activity of decision-making |
| Lin32 | Parent perspectives in SDM for CMC | USA | 2020 | To identify components of SDM unique to the care of CMC from the perspective of parents. |
| Jabre33 | Parent perspectives on facilitating decision-making around paediatric home ventilation | USA | 2021 | To understand parent perspectives about how clinicians can better facilitate decision-making around home ventilation |
| Reeder34 | Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care? | UK | 2021 | To explore the important themes of dis/empowerment and the influence of the therapeutic relationship |
| Buchanan4 | Decision-making for parents of children with medical complexities: activity theory analysis | Canada | 2022 | To explore decision-making of parents of CMC as an activity within the context of a process shared between clinician and parent |
CMC, children with medical complexity; SDM, shared decision-making.