‘I feel like my house was taken away from me’: Parents' experiences of having home adaptations for their medically complex, technology‐dependent child

Abstract Technology‐dependent children are a sub‐population of seriously ill children with life‐limiting conditions who are being cared for at home by their families. Although home‐based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto‐driven photo‐elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology‐dependent child (aged 5–25 years) living in England, Scotland and Wales and David Seamon's five concepts of at‐homeness (appropriation, at‐easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta‐theme of ‘Home needs to be a home for all family members' and the three key themes: (1) ‘You just get told’ and ‘you're not involved’; (2) It's just the ‘cheapest’, ‘quickest’, ‘short‐term’ approach; (3) Having ‘control’ and ‘thinking things through.’ The need to involve parents in decision‐making about adaptations that are made to their home (family‐informed design) is clear, not only from a cost‐saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well‐being and feelings of at‐homeness for the entire family.


| INTRODUC TI ON
Children who are dependent upon technology are resource-intensive (Breneol et al., 2019), a high-cost subpopulation of seriously ill babies, children and young people with life-limiting conditions (de Banate et al., 2019). Advances in science, technology and care (Carter et al., 2015;Jarvis et al., 2016;Kirk, 2010) mean this population is rising globally, with data from Canada (Breneol et al., 2019), the United States (Maypole et al., 2020), Asia (Nishigaki et al., 2016) and Europe (Fraser et al., 2021;González et al., 2017;Nicholl et al., 2013;Paddeu et al., 2015) indicating this. The number of families in which children have life-limiting and life-threatening conditions in England government-funded home adaptations are not known. Therefore, the aims of this study were to: Identify the types of home adaptations that families require to care for their child at home; explore family members' experiences of having these adaptations made to their home; and explore family members' satisfaction with these home adaptations.
Data are presented from 12 parents who were asked to share their experiences of having home adaptations to be able to meet their technology-dependent child's needs at home. These data were collected as part of a broader study of 17 family members (two technology-dependent young people, two siblings [from two families], 12 parents and one grandmother) which aimed to identify how medical technology impacts the home and life at home for technology-dependent children and young people (aged 5-25 years) and their family members (Mitchell, 2020;Mitchell et al., 2022).

| ME THODS
A generic qualitative methodology (Percy et al., 2015) that draws on the strengths of qualitative approaches (Bellamy et al., 2016) was selected for this study. This approach enabled the first author (TKM) to work collaboratively with each participant in a holistic, inductive and empowering way (Aurini et al., 2016) to construct a deep and detailed understanding (McLaughlin, 2012;Payne & Payne, 2004;Silverman, 1993) of how technology-dependent children and their family members observe, make sense of and describe how medical technology impacts upon their home and life at home.

| Recruitment, setting and sampling
Parents were eligible if they could speak and understand English, give informed consent and had a child aged 5-25 years who required at least two pieces of medical technology to sustain their life and/or monitor and treat their medical condition. The age range was based on three factors: Recognition that children aged over 5 years old are able to engage effectively in research (Castor et al., 2018;Mandleco, 2013;Vogl, 2015); the English legal definition of a child (0-18 years) (HM Government, 2018); and legislation that states that the definition of a child is extended to age 25 when a person requires 'more support than is available through special educational needs (and disabilities -SEND) support' (HM Government, 2018;HM Government, 2004;HM Government, 2014). Their child must have used medical technology for at least 3 months, at home in the UK. Participants were recruited purposively by advertisements through child and adult hospices and charity organisations in the UK and a Service User and Carer Council at the host University.

What is known about this topic?
• Families have been caring for their technologydependent child(ren) within their own home since the late 1980s when discharge home from hospital became the guiding goal of care. However, the types of adaptations that are made to family homes to facilitate this care and family members' experiences and satisfaction with government and health service directed home adaptations are unknown.

What this paper adds?
• This paper reports the types of adaptations that are made to the homes of technology-dependent children in Great Britain and how they were funded.
• Families who self-funded their home adaptations had better experiences in terms of being involved in decision-making and having control compared to families whose adaptations were fully funded by a government grant.
• This is the first study to identify that parents' experiences of having home adaptations made impacts upon their feelings of at-homeness.

| Data collection
Inductive face-to-face or telephone auto-driven photo-elicitation interviews were conducted with parents by the first author. The autodriven photo-elicitation interview method was chosen because it aims to be an empowering and engaging method (Clark-Ibáñez, 2007) that uses photographs as a stimulus for conversation during interviews (Papaloukas et al., 2017;Soaita & McKee, 2020). Semi-structured interviews were selected when parents did not wish to or could not take photographs as they are considered to be a participatory method (McLaughlin, 2012). An exchange model of communication was used rather than using the interview schedule in a prescribed or rigid way.
The setting for the interviews was the family home. All interviews were digitally audio recorded. Informed written (or for telephone interviews, verbal) consent was obtained before interviews commenced.
After informal introductions and talking about their daily life, parents began their interview with a chronology of their child's health and technology care needs. Parents emailed any photographs taken on their own device (range 8-26, mean 15 photographs) to the first author's secure university account before and during their interview.
Author one created a Microsoft Word document of up to six photographs per page and returned these documents to parents before their interview. Parents taking part in photo-elicitation interviews were asked to choose which photograph they wished to start their interview with and why they chose that photograph. Similarly, parents taking part in semi-structured interviews were asked to choose which piece of technology they would like to discuss first and why. Parents then selected the photograph or technology they wanted to discuss next, and this process was followed throughout the interview. Interviews were undertaken between August 2017 and June 2018.
At the end of the interview, all parents were provided with a list of support organisations.

| Data analysis
All interviews were transcribed verbatim and anonymised before being imported into NVivo 11 (QSR International, 2022). They were analysed interpretatively using Braun and Clarke's (2006) sevenstage thematic analysis method.

Stage of analysis Description of actions taken
Stage 1 Transcription Digital recordings of Photo-Elicitation (PE) and semi-structured interviews were transcribed verbatim by the first author (TKM) into a Word document, concurrently using the Word review feature to annotate the transcript with reflections from the interview, explanations for context and initial code ideas. Unique details about the family and parts of photographs were redacted and pseudonyms were used to mitigate risks to participant anonymity.

Stage 2
Reading and Familiarisation with the Data Field notes and photographs were reviewed by the first author and each transcript was read again, at least twice, whilst concurrently listening to the audio recording again to highlight items of potential interest and for immersion and familiarisation with the content of each interview transcript, field note and photograph.

Stage 3 Coding across the Entire Dataset
Transcripts and photographs were then imported into NVivo 11 (QSR International, 2016). With the exception of the demographic data collected at the beginning of each interview, analysis was inductive. Each participant's transcript was read again, in the order that the interviews were conducted and codes were ascribed to the data. A code list was printed after coding the three interviews from Family 1 and the interview from Family 2 to check with authors two to five (LB, LB, AD, BC) that codes had been grouped logically and for the first author to have a copy to refer to whilst continuing to code across the entire dataset. A record of each code list was kept after coding each participant's data to demonstrate to authors two to five how each code evolved or grew. Transcripts coded before new sub-codes were identified were revisited to ensure that codes were still representative of the data coded under them.
Stages 4, 5, 6 and 7 Searching for, Reviewing, Defining and Naming Themes and Writing Up Although stages 1-3 of data analysis were more linear, stages 4 to 7 were recursive and non-linear. The first author had to move backwards and forwards between these stages to search for, review, define, name and write up interpretive themes that would provide a trustworthy account of the data. Overarching themes and subthemes were compared and contrasted to work out the scope and focus of each theme and to define and name the final themes and subthemes. The raw data were revisited by the first author several times over stages 4 to 7 to recheck the interpretation of participants' data, and check that the themes and sub-themes accurately represented their narratives when new codes (or sub-codes) were added (when later participants' data were analysed) or themes (or sub-themes) were renamed. Each code and sub-code was interrogated again at the end of the analysis (Stage 6), working deductively rather than inductively at this stage in order to identify data that would answer the three research objectives ('the technologies or equipment that are used by or for the child', 'whether and how the home is changed by the presence of medical technology' and 'how life at home with medical technology is experienced by different members of a family with a child who has complex health care needs'). Member checking of coding, themes and sub-themes by authors two to five support the credibility of results. Second level coding shifted and developed further during the final writing up stage (Stage 7).
The core criteria of trustworthiness (Hardwick and Worsley, 2011;Bryman, 2012) was used to guide all aspects of the study. The first author worked with the co-authors to consider credibility, dependability, confirmability and transferability (Hatch, 2007) throughout the study to ensure confidence in the interpretation and presentation of rich, detailed and meaningful data (Braun and Clarke, 2006;Bates et al., 2017).
A description of the actions taken is provided in Table 1.

| Ethics approval
Ethics approval was obtained from Edge Hill University Faculty of Health, Social Care and Medicine Research Ethics Committee (FOHS 171). All participants provided informed consent prior to data collection.

| FINDING S
The findings reflect data from ten mothers and two fathers (10 families living in England, Scotland and Wales) who participated in this study.
Two families had two children who required technology (a male and a female in both families) so 12 children (9 males and 3 females) aged 5-25 years are represented. Nine families had more than one child living at home. Eight families comprised of a mother, a father and their biological or adopted child(ren) and the other two families comprised of a mother and her biological or adopted children. All families owned rather than rented their home, which was at least a two-storey dwelling and had lived there for around a decade. Due to the level of care needed by their child, seven mothers had left paid employment and three had reduced their working hours to become their child's primary caregiver.
Three mothers and two fathers took part in face-to-face, autodriven photo-elicitation interviews. Four mothers took part in telephone auto-driven photo-elicitation interviews. Two mothers participated in face-to-face semi-structured interviews, although they took and shared photographs with the interviewer after their interview.
One mother participated in a telephone semi-structured interview.
Pseudonyms were assigned for all participants in the order of participation; the child's age is presented as a range rather than a specific number to ensure anonymity (Table 2).

| Overview of the adaptations and extensions to the family home
All the parents were explicit about wanting to care for their child at home because the home was the place where they could meet Face-to-face photo-elicitation interview.
Face-to-face semi-structured interview followed by Bonnie directing the taking of photographs.
Telephone semi-structured interview.
their child's social and developmental needs as well as their medical needs. However, this meant that alterations to the physical structure of the home and changes to how rooms were used in the home were necessary to ensure adequate space, facilities and access to meet their child's personal, medical and mobility needs. The children's complex healthcare needs meant they required between 7 and 10 categories of technology or equipment (Table 3). In total, 137 items of technology, equipment and consumables were needed to prevent their death and meet their functional needs (Mitchell, 2020: 88). Home adaptations, in particular, wet rooms, tracking and hoists

TA B L E 3
Categories and examples of technology and equipment required by the children (Mitchell, 2020: 89-90)  and mobilisation technology enabled families to safely attend to these needs and fully involve their child in family spaces (e.g. lounge, kitchen), rather than their child being in bed, away from the rest of their family. However, the amount, size and weight of technology or equipment ( All the families had at least two adaptations made to their home to be able to care for their child there (Table 4).
Although parents from all the families expressed gratitude for the extensions, adaptations and medical technology that were made to or installed in their home, it was evident that the different forms of funding (Table 5) influenced their experiences.
Three themes about the parents' experiences of having extensions and adaptations to their home were identified from the data: '(1) "You just get told" and "you're not involved": parents' experiences with work fully funded by government grants'; (2) 'It's just the "cheapest," "quickest," "short-term" approach: parents' experiences with utilitarian approaches to adaptations'; (3) 'Having "control" and "thinking things through": parents' experiences of family-informed design'. These three themes will now be presented. Extending the ground floor of the home was necessary to create more indoor space for a bedroom or wet room to accommodate their child and technology.

|
Walls moved or removed / rooms reconfigured 9 This included garages, kitchens, or lounges which were converted into a bedroom, wet room, or space that was specific to their child's needs. Reconfiguration of rooms helped to support their child's care, improved opportunities for mobilisation and made it easier for their child to take part in family routines and activities within their home.
Whole ground floor of house made open plan 2 Homes made an open plan so parents could always see, hear and be vigilant to their child's needs. Open plan living makes it easier for the child to be mobilised and be part of family activities.
Bigger kitchen 4 Kitchen extended or knocked into another room to be able to always see, hear and be vigilant to their child's needs.
Child's bedroom downstairs 7 The creation of a specially adapted bedroom downstairs was often the most economic option to be able to manage their child's limited mobility although it created a separation of the parents from their child at night.
Special bathroom or wet room 9 Two families had a special bath for their child, whilst other families had no choice but to have their bath removed to create space for a wet room (even though they had other young children who preferred a bath).
Doorways widened (and sometimes the top of the doorframe to be removed) 3 Widening doors were necessary to accommodate movement in a wheelchair, power chair or shower trolley. This was also needed to accommodate ceiling tracking, hoist and sling.
At least one hoist and ceiling tracking fixed to the ceilings 9 This often involved the workforce having to access the upstairs floors of the home to reinforce the ceilings to bear the weight of the child and their equipment. The hoist and tracking were necessary to help lift and move the child safely. Furthermore, parents whose extensions and/or adaptations were fully funded by government grants had no choice over who to appoint as builders as this was controlled by the council. Three mothers had negative experiences with builders appointed in this way; they perceived their builders to have engaged in poor workmanship and to have lacked respect for them. Emma explained that the builders were smoking cigarettes in the room that was going to be her son's bedroom and noted that 'they're completely inconsiderate to whose house they are in!' Faith said that the builders left a 'right mess' when they converted her garage into a bedroom for Finley and the long-term memories of this 'right nightmare' were still evident. Bonnie said that the poor workmanship has annoyed her daily for over 10 years explaining that the builders had 'no pride in their work'. These mothers felt a loss of control over their home; this resulted in them feeling ill at ease there.

| It's just the 'quickest', 'cheapest', 'shortterm' approach: parents' experiences with utilitarian approaches to adaptations
The perception that council-funded adaptations were driven by a utilitarian and cost-driven model was held by nearly all the mothers, including those who ultimately self or partially funded their Deborah's family ultimately withdrew their application for a Partially self-funded 4 Self-funded 2 a Notes with regard to funding for adaptations -One family required an extension before their child was 3 years old (which is the Disabled Facilities Grant eligibility age), so they self-funded altering their garage into a downstairs bedroom and then once their child was old enough to meet the eligibility criteria, their extension and other adaptations were fully funded by their local council; Special bathrooms or wet rooms were funded by a local council Disabled Facilities Grant for eight families. Families who paved or tarmacked their front garden and/or sloped their back garden self-funded these adaptations; The installation of extra electrical sockets was funded by NHS Continuing Care.   Colin said that because of their occupational therapist and their architect have an ongoing relationship with his family their home adaptations suit the functioning of his family and the aesthetic of their home-they 'simply faded into the background', enabling his home to be a home for the whole family.

| DISCUSS ION
This study (Mitchell, 2020) is the first to identify the types of adaptations that families who have a technology-dependent child require to enable their home to be a place of care. A new finding of this study is the identification of the differences in experiences and outcomes of home adaptations between parents who received fully funded government grants and whose workforce were appointed by their local council and those who funded them (fully or partially) and appointed contractors themselves. Although Smethurst et al. (2021: 205) study conducted in Australia found that 'equipment impacts on all areas of life', this study is the first to demonstrate the impact of home adaptations on all five aspects of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) (Seamon, 1979a(Seamon, , 1979b. and family's long-term health, well-being, accessibility, privacy and dignity needs. King et al. (2017) and Smethurst et al. (2021) discuss the importance of family-centred practice for the child and their family unit.
Family-informed adaptations enabled families who fully or partially self-funded their home adaptations to function and feel comfortable and safe within their home, resulting in a home that felt like home for all family members. Feeling at home and having a sense of control over their home was particularly important for mothers who were their child's primary carer and spent most of their time at home caring for their child.
The well-being of families has been described as 'the cornerstone of a healthy society' (King et al., 2017: 335); this should be equitable for all families. However, despite provision being made for the care of children with complex healthcare needs (Department of Health, 2011;HM Government, 1989, 2003, 2004, the expectation to receive accessible, individualised, high-quality preventative and treatment services (Nicholl, 2015) that enhance the safety, health and well-being of their family members were not always met.
Parents who received fully funded government grant adaptations did not feel involved, listened to, or treated with respect during their home adaptation application, planning and building processes; thus, their well-being was negatively impacted. This finding extends Seamon's (1979a) appropriation aspect of at-homeness by adding knowledge that negative memories of lacking autonomy and control over home adaptations can result in parents feeling an enduring loss of control over their home. This loss of control is experienced as a sense of alienation from their home. Relph (1976) refers to this as existential outsideness, which is an inability to feel fully immersed in a place.
Having the location of their child's bedroom dictated to them and their child's bedroom being located downstairs caused distress for more than half of mothers in this study not only because of the impact upon the look and functioning of the home (although it is acknowledged that this contribution to knowledge is likely to be UK specific and will not be representative of families who live in single-level homes) but also because it felt alien and less safe for their child to be separate from them. Parents said that they need to be constantly vigilant and available to attend to their child's health and technological needs, even when paid carers are responsible for their child's care. Having a safe environment was requisite to place 'belongingness' (Dunbar et al., 2019: 104) and feeling atease (Seamon, 1979a) in their home for the parents in this study and is a finding that replicates those of other studies that have researched at-homeness in family homes (Moore et al., 2010;Owen & McCann, 2018;Zingmark et al., 1995).
Not being involved in decision-making impacts upon autonomy (Sine, 2015) and poor communication between professionals and the parents of children with disabilities can be problematic for home adaptation outcomes (Boniface & Morgan, 2017). Castor et al. (2018) state that families of sick children require trusting alliances and shared decision-making with health care professionals to strengthen family life and promote the health of all family members, yet despite their substantial expertise, the parents who received fully funded government grants in this study felt powerless when they were 'silenced' (Currie & Szabo, 2019: 1251) by those involved in their home adaptation processes. This resonates with the findings of other studies (Castor et al., 2018;Dybwik et al., 2011). Parents also felt powerless when professionals and contractors did not have the required attitude, knowledge, skills and understanding about the individual needs of their family and did not consider that they had been working hard to make their privately owned house a home for many years. Not being involved in decision-making resulted in the home adaptations not suiting their child and family's long-term health, well-being and accessibility needs or the daily routines and functioning of their family and consequently had a detrimental impact upon all five aspects of at-homeness (Seamon, 1979a(Seamon, , 1979b.
Nearly all the mothers, including those who self or partially funded their home adaptations, felt that their local council took a utilitarian approach and prioritised the cost of the extension and adaptations over their family members' needs and their family life.
They felt powerless when those involved in the adaptation processes perhaps saw their child 'as a burden or a cost' (Gallo et al., 2021: 1) or as 'undeserving' (Cross, 2008 (Fraser et al., 2020); this should be addressed in future research.
The perspectives of same-sex parents and single fathers might differ from those of the mixed-gender and single-mother families who took part in this study.

| CON CLUS ION
This study highlights the differences in experiences and outcomes of home adaptations between parents who received fully funded government grants for their home adaptations and those who funded them (fully or partially) themselves. The quality of experiences that parents have with architects, builders, occupational therapists, physiotherapists and other professionals who are involved in their home adaptations ultimately has a long-term impact on the home and life at home for families who have a medically complex, technology-dependent child.
Those involved in home adaptations require expertise and experience in the current and future needs of this growing population of children and their family members. They require excellent interpersonal and communication skills to build strong relationships and work collaboratively with all families who have a technology-dependent child, and in an integrated manner with each other. They need to take a family-centred approach and combine their experience and foresight to ensure that adaptations are safe, accessible, functional, aesthetic and future-proofed for all members of a family with a technology-dependent child, as well as being cost-effective for the state.
Providing the option of self-managed funds could enable families to select and appoint their own workforce to ensure family-centred home adaptations that the whole family can enjoy, function effectively and feel at home in.

AUTH O R S ' CO NTR I B UTI O N S
All authors were involved in the conception and design of the study.
TM collected the data. TM analysed and interpreted the data with oversight from BC, LBr, LBl and AD. TM drafted the article. BC, LBr and LBl critically revised the article. All authors gave approval of the version to be published.

ACK N OWLED G EM ENTS
Special thanks are extended to the families who took part in this study and to the organisations who supported patient and public involvement and the recruitment of families across the UK to the study.

FU N D I N G I N FO R M ATI O N
The first author (TKM) was awarded a PhD studentship (2016-2019) by Edge Hill University, Ormskirk, Lancashire, UK. Funders did not have any involvement in the study or the dissemination of findings.

CO N FLI C T O F I NTE R E S T
No conflicts of interest for all authors.

DATA AVA I L A B I L I T Y S TAT E M E N T
Due to privacy and ethical concerns, neither the raw data nor the anonymised and coded data can be made available as it would be too identifiable to share given the small number of participants from a very specialised (and small) population.