Parenting in Context – Cognitive Difficulties and the Realities of Family Life

Recruitment

The data is based on semi-structured interviews with parents conducted in Norway between October 2016 and July 2018. The study employed an explorative qualitative design (Stebbins 2001). Recruitment targeted parents with a range of cognitive difficulties, including lifelong conditions (e.g. mild intellectual disabilities) and acquired conditions (e.g. brain injuries, neurodevelopmental or psychiatric disorders).

Initial recruitment efforts were made through a regional health and rehabilitation service, which distributed an easy-to-read invitation; however, no participants were recruited through this route. The research team subsequently collaborated with a national patient and disability organisation supporting individuals with cognitive difficulties and brain injuries, which disseminated the study information. The inclusion criteria were then refined to encompass parents with cognitive difficulties more broadly (Tøssebro et al. 2014). Recruitment was challenging and continued for over a year. Participation was voluntary, with written informed consent, and participants were reminded of their right to withdraw at any time. Data confidentiality was strictly safeguarded (Table 1).

The sample comprised of five parents living in rural areas. Participants varied in gender, family structure, number and age of children, and employment status. Three participants had acquired brain injuries (from car accidents or stroke), while one had a mild intellectual impairment. Three became parents before the onset of their impairment, and two afterwards. At the time of data collection, families typically included one or two children aged 6–18 years. One participant was unemployed, and two engaged in part-time voluntary work.

Interviews lasted between 60–90 minutes and were conducted primarily in participants’ homes to foster trust and rapport (Ellingsen and Kittelsaa 2010). Most participants were interviewed twice, resulting in nine interviews; one participant was interviewed once. In total, 10 interviews were conducted, constituting a small-scale longitudinal qualitative design (Landstad et al. 2023).

Ethics and consent

Ethical approval was granted by the Norwegian Centre for Research Data (NSD), now SIKT – Norwegian Agency for Shared Services in Education and Research (project no. 2016/48214/NSD). The study followed the Helsinki Declaration (WMA, 2024) and national guidelines for research involving vulnerable groups (NESH quoted in Stakrud et al. 2021). Information was provided in accessible Norwegian, and participants’ capacity to consent was assessed individually; when full consent was not possible, proxy consent and participant assent were obtained. Participation was voluntary, with the right to withdraw at any time. Risks were minimised, and benefits considered to outweigh potential burdens. Data was anonymised during transcription, stored securely on encrypted and password-protected systems, and handled in compliance with GDPR. Only the research team had access and no identifiable information appears in publications (NESH quoted in Stakrud et al. 2021). Generative AI was used only for translation and language editing within a university-based Copilot platform. It was not used for analysis, reference management, or data processing. All use followed institutional and European guidelines, and the author holds full responsibility for the final manuscript.

When cognitive difficulties meet daily life parenting demands

This theme explores how everyday parenting demands interact with cognitive difficulties, creating barriers that complicate parents’ efforts to fulfil their parental role. Jack, for example, a parent with a wife and two teenage children, faced challenges related to memory and concentration problems related to his brain injury. This also caused Jack to develop hearing loss, requiring him to look at the interlocutors when communicating. His brain injury occurred at a young age, which impacted his education and led to many years of part-time work in various businesses. His wife commented that, ‘it has been a challenge for him to get a job; it hasn’t just been easy, but he hasn’t given up, and persevered’. During the interview, Jack saw opportunities to obtain a driver’s licence and secure a stable job. During his children’s early years, he was actively engaged in household and childcare. When the children grew older, he began facing new challenges stemming from his memory problems. Jack actively participated in various school-related activities for his children and was nominated to serve on the school’s parent committee. However, he found these activities challenging because they required him to absorb and organise ‘large amounts of information and communicate it effectively to others’, ultimately leading him to decline the position.

Other parents reported that their parenting practices were affected by significant physical pain, which caused exhaustion and the need for daytime rest, alongside cognitive difficulties. Pain management played a significant role in enabling them to take part in the everyday practices of parenting. Two mothers with acquired brain injuries occasionally experienced pain and fatigue, requiring daily rest. Engaged in part-time work activities, they had flexibility in managing their workload. For instance, Sara, one of the mothers, lives with her husband and a school-age child. Having acquired her brain injury before becoming a mother, she previously received education and gained work experience. Currently on a disability pension, she continues to engage actively in organisational work. She was committed to being attentive to her child, though meeting these needs often required considerable effort because of the level of support her child sought.

During periods of migraine and headaches, which sometimes included days of ‘incredible amounts of pain’ and exhaustion, managing childcare responsibilities became challenging. These episodes required significant rest and self-care, which was difficult to balance with parenting. Anny acquired a brain injury after her marriage and two children, now in primary and secondary school. She initially aimed to return to her previous work post-injury but found even part-time employment demanding:

The transition from working part-time before my disability to becoming fully disabled was a painful process. I never expected to become disabled at such a young age. Over time, I realised that I needed to prioritise self-care and only do what my body could manage.

While she still felt she had ‘more to offer’, she occasionally worked a few days in a nursery school, which she found, ‘very, very enjoyable’. She had a daily routine that included physical activities like walking, but she also had to make time, ‘for rest’. Anny strived, ‘to live as normally as possible’, but recognised that, ‘every now and then, my body sets its limits’. Eirin, a single mother living with her youngest child, experienced learning difficulties and faced challenges in balancing parenting and employment due to changes in her impairment. She had recently been working a few hours one day every other week, which she greatly enjoyed. However, the workday, particularly the long bus journey, gradually affected the rest of her day. She explained that ‘when I get off the bus at home, I can barely walk’. While the level of physical pain could vary, getting up in the morning was a daily struggle due to, ‘a very stiff body’, requiring, ‘more time than usual to get moving. Dealing with this physical stiffness and pain presented daily challenges. She, ‘grits her teeth and does it’. However, the pain was adding to the responsibility of raising a child in primary school who needed constant attention and care. Eirin emphasised that the pain presented challenges, but she persevered and did what needed to be done. Her child just started first grade and required ongoing support. Eirin relied on her electric bicycle for outdoor transportation, such as taking her child to school, and encountered difficulties when the bike needed repairs. She was particularly concerned about the upcoming winter when, as she put it: ‘I wouldn’t be able to cycle’.

The demands of parents bringing their children to school were another challenge, and some had their applications for free school transport denied. A father, James, suffered an acquired brain injury after marriage and having two children in primary school. He described his daily life as challenging, due to reduced noise tolerance, an ongoing struggle, ‘with headaches, balance issues and [difficulty] concentrating … and then the fact that I get exhausted so quickly’. All this made sustained focus difficult. This pain and fatigue necessitated daily periods of rest. Despite his attempts, he could not return to his previous employment. His pain, fatigue, and need for rest, significantly affected his ability to engage in parenting effectively. His wife noted that he also experienced memory challenges; he didn’t remember names

…and he doesn’t recognise people, which hindered his interactions in social settings, He seems to be very supercilious, maybe … //for many, because he walks straight past …. //and they expect him to recognise them.

People often mistook his difficulty remembering names and recognising others as arrogant, leading to misunderstandings. James had been highly involved in various parenting activities before his brain injury but found this increasingly challenging afterwards. The situation became difficult as he was ‘getting physically and mentally tired’, and most people were unaware of his impairment and the communication difficulties it caused. Periods of physical and mental exhaustion often left James choosing to remain at home.

Parenting demands: Surpassing barriers to fulfil aspirations

This theme examines parents’ strong motivation to remain actively involved in their children’s daily lives and to uphold family routines despite considerable cognitive and physical challenges. Parents experiencing chronic pain and fatigue described considerable challenges in sustaining the level of engagement and quality time they wished to provide for their children. These difficulties often led them to worry about their children’s well-being and, at times, to feel inadequate.

Sara, coping with a recurring and incredible amount of pain, felt torn between her child’s need for attention and her own need for rest, questioning her ability to provide adequate care. She desired nearby childcare assistance during her self-care time, due to her impairment, as she needed what she called: ‘some free time’ (recovery time). This made her fear that she was not providing, ‘correct parenting, making me uncomfortable’. Both Sara and Eirin highlighted how expectations placed on parents with reduced energy or cognitive capacity can shape their children’s experiences and well-being. Anny described how her health had changed since earlier difficult periods when, as she put it, ‘the family had worries about me’. Yet she appreciated her family’s open communication. Now, there were, ‘no topics around me … and we don’t talk very much about my being sick, but we have a completely open line about it’. This made their, ‘everyday life as normal as possible.’ James felt his role as a father drastically altered when he had his brain injury, and that, ‘the dad role had been completely turned on its head’. He was struggling when he needed to leave his children, as he was in pain. This disrupted their sense of togetherness and altered the family’s holiday traditions. His spouse commented that, ‘it was all four of us before, so there is a very, very big difference … the whole life situation has changed’. Jack, facing memory issues, found it challenging to assist his teenage children with homework. He felt increasingly disconnected from his children and found himself slower to pick up on things in the moment. His reduced processing speed in conversations often led to misunderstandings, highlighting the challenges he faced in adapting to his changing role as a father:

I have problems with understanding what they are working on … it becomes difficult for me to be suddenly thrown into a situation (….) even if it’s quite simple, I can’t figure out how to do it, so I need to learn it myself first – and I spend too much time.

He talked about conversations with his children and their friends in which he could not ‘find the words quickly enough’ or speak quickly enough. He needed time to think about what to say and to find words when speaking.

Holding it together: in the face of struggles

This theme explores how parents navigated daily and long-term challenges while striving to maintain a meaningful and dignified family life through adaptation, communication, and support networks. Three parents emphasised the importance of discussing parenting responsibilities openly and collaborating closely with their partners.

Jack and his wife highlighted the need to address the altered family dynamics arising from his short-term memory difficulties. Jack relied heavily on reminders for dates, appointments, and tasks, placing a considerable burden on his wife, who had to remember and coordinate these activities for both parents. This responsibility often left her exhausted. Open communication was essential for, ‘getting back on track’, and they had gradually developed their parenting into a joint project grounded in collaboration. Sara also underscored the value of a strong partnership with her husband, particularly in situations demanding tight time management, such as ensuring their child arrived at school on time. James and his wife similarly described how conversations, sometimes involving the children, had helped them create new ‘forms of togetherness’ that were less stressful for the father, including shared breakfasts and car journeys to children’s leisure activities and friends. These new routines helped re-establish the father’s close relationship with the children. However, his health changes significantly altered earlier family routines, particularly during holidays and shared activities. His wife noted that she now carried a much greater share of responsibility, describing it as: ‘a battle that was burdensome, as before it was all four of us, so there is a very, very big difference.’

Co-parenting emerged as another important aspect shaping parenting practices. When both parents were occupied, and their children required additional support, friends and neighbours sometimes stepped in as, ‘surrogate co-parents’. Anny emphasised the importance of a strong support network, exemplified by her, ‘dinner club’, where friends gathered to cook meals for the family. Several parents described relying on relatives to share childcare and household responsibilities. Sara considered her family close and supportive, while Eirin described a network of friends who could assist with childcare when needed. She highlighted the value of structured arrangements, such as scheduled, ‘childcare- and free weekends’ facilitated by family members. These arrangements enabled her to prioritise rest and create positive experiences for her child, giving the child access to activities they ‘might not otherwise have had’.

Parents also stressed the importance of active involvement in their children’s school lives, including monitoring school progress and supporting social participation. However, many expressed frustrations with what they perceived as insufficient or inconsistent support from schools and welfare services. Three parents encountered barriers that restricted their participation in school-related activities and raised concerns about their children’s learning and well-being. Sara, whose child attended primary school, deeply wished to be involved. Yet her invisible cognitive impairment became a substantial barrier when communication relied heavily on digital or mobile platforms. She emphasised the need for ‘clear and structured information’, rather than having to navigate multiple online systems independently. The process felt overwhelming: ‘I must go in and look here and there (…) and then go on the website to find information.’ She expressed fear that ‘my child may be injured because I’m unable to follow up,’ describing the school system as one that had ‘already banned people like me.’

Parents who maintained regular contact with teachers generally found communication more manageable, but this changed when their children encountered social, emotional, or learning difficulties. Jack and his wife experienced this when trying to improve their child’s learning environment; the teachers were neither proactive nor communicative. Jack’s wife found this particularly challenging for her husband:

He needs time to find words … it takes time to say what is on his mind. What he says is often wise, but he needs time. And then they don’t always listen; it takes time to listen. And this creates frustration, not only for him, but also for me, because I think it’s about a lack of respect.

James and his wife faced similar difficulties when one of their children developed emotional and social problems after the father’s brain injury. Despite their efforts to raise concerns, they felt that the school did not take bullying seriously and ‘nothing constructive was done … it just flowed into the sand’. Feeling isolated and unfairly blamed as inadequate parents, they sought help outside the school system. This guidance proved valuable, helping them understand the child’s reactions – grief, anxiety, and fear related to the father’s condition. James’s wife noted the constant struggle to secure appropriate support: ‘Fixing and arranging … fortunately, I’m as resourceful as I am. I think we wouldn’t have gotten the help that our child needed if I hadn’t been there.

Parents described a wider pattern of health and welfare services overlooking the needs of families affected by acquired brain injuries. Sara highlighted additional challenges faced by parents with invisible impairments, including unequal opportunities to support children requiring extra assistance. She perceived a top-down attitude among service providers and felt that navigating the system required significant resourcefulness on their part to fully recognise her as a competent parent. Many families had contact with disability organisations that offered information, activities, and group support. Parents valued these opportunities, and children who participated gained relevant knowledge and social support that families considered important.