Caring for children and adults with lifelong care needs across the life course

Abstract

Introduction

Children with medical complexity often have substantial care needs requiring support and care across the life course. The impact of meeting care needs across the life course affects the physical, mental health and economic status of caregiver and families. In child health, little attention is paid to the experiences and needs of caregivers as children transition to adult care. The purpose of this pan-Canadian research study is to understand the experience of parents who are primary caregivers to children and adults with medical complexity and lifelong care needs.

Participants and Methods

In this mixed methods study 77 caregivers completed measures of parental stress and difficult events (Pediatric Inventory for Parents, PIP), family empowerment (Family Empowerment Scale, FES), and sense of competence (Parenting Sense of Competence-Revised, PSOC-R). Twenty-one parents took part in subsequent interviews to describe their experiences, challenges and needs.

Findings

Mean FES subscale scores indicated moderate empowerment. Mean PSOC-R subscale scores reflected moderate parenting competence. Mean PIP–Frequency subscale scores suggested that stressful situations occurred occasionally. Mean PIP–Difficulty scores suggested stressful situations were experienced as moderately distressing and burdensome. The following themes were identified from the qualitative interviews and provide context to the quantitative surveys: a) extreme caregiving demands evolve overtime, impacting all areas of caregivers’ lives; b) health, social, and educational supports decline as children reach adulthood; c) caregivers must often find and fund their own care solutions, and d) caregivers identified a need for comprehensive wraparound supports.

Conclusions

While caregiving across the life course, caregivers grapple with significant challenges and lack of support to meet their child’s care needs. This study informs the need for effective holistic supports and policy solutions for caregivers and families that address needs in health, social care and education.

Highlights

• •Children with medical complexity (CMC) have substantial care needs requiring care.
• •CMC are living into adulthood requiring caregivers manage their complex care needs.
• •Managing care needs affects the physical, mental and economic status of families.
• •Little attention is paid to the needs of families in transition to adult care.
• •Holistic supports are needed that address health, social care and economics.

1. Introduction

Children and adults with medical complexity often have substantial care needs requiring support and caregiving across the life course. With advances in neonatal and pediatric care and technology, children with medical complexity are living into adulthood, requiring caregivers to manage their complex care needs.¹ The experiences and challenges of parents who provide physical and emotional caregiving to their children through the life course into adulthood are not well known or recognized.² The lack of understanding of the experiences of caregivers prohibits advancement of further research, strategies and policies. This knowledge can inform future development, implementation, and access to effective daily supports, frameworks, decision making processes, and policy solutions for caregivers and their families across health and social care and policy development. Experiences for caregivers focused on difficulties and challenges with lifelong caregiving including parental stress, empowerment and competency and the context surrounding these experiences.

1.1. Background

Children and young adults with medical complexity represent a small subset of the Canadian pediatric population with over 100,000 children affected.³ However, children with medical complexity represent high users of health and social care support.4, 5 Medical complexity as defined by Cohen⁶ and further expanded by Miller ⁷ has four criteria: 1) high utilization of health and community care resources; 2) functional limitations affecting participation in daily life and the family unit; 3) complex chronic medical conditions; and 4) identification by parents of a high number of health and social care needs. Medically complex children and their families have intensive lifelong care needs that require more than the standard treatments afforded by existing health care models of care and support.8, 9 Children and adults with complexity also experience a significant number of transitions in their care journey, which makes them vulnerable to gaps in provision of appropriate care from fragmented systems and sectors.¹⁰

Care for the child and adult with medical complexity is almost exclusively provided by family members at home.11, 12. Parents must become expert care providers responsible for the necessary and complex day to day care.¹³. Furthermore, children and adults with medical complexity require frequent support from inpatient and outpatient medical and community-based systems, and government disability support. Parents function as advocates, case managers, and medical experts, and remain responsible for the physical and emotional care of their children even into adulthood.¹⁴ These relentless and complex care needs for children, pervasive over time, and social and economic circumstances, often affect the physical and mental health of parents and other family members.15, 16 Consequently, family members often develop associated health problems 17, 18, 19 and financial difficulties.²⁰ Mothers, who are often primary caregivers, experience severe and frequent episodes of physical and mental health issues - the result of chronic care demands and hypervigilance. 20, 21 In addition, the accumulation of lifelong caregiving leads to higher rates of physical, mental and financial impacts (for example, caregivers who provide care for 5 years or more report increased physical health challenges).²⁰ Unfortunately, this interplay and interconnection of the health of the children with medical complexity and the family as lifelong caregivers is not well recognized by health and social care providers and policy makers. 22, 23

Lifelong caregiving is not well recognized, compensated or valued by society but is essential in reducing societal costs for supportive living, health and social care costs and keeping children and adults with complex needs healthy and safe.13, 24, 25 In child health research, there is some recognition of the support needs of parents, but this attention to caregiver needs is lost when the young adult leaves the pediatric health system. Parents are intricately involved in child health and social care and the transition to the adult systems of care.26, 27, 28 The literature on caregiving has largely focused on the experiences of individuals caring for ageing family members such as spouses or parents29, 30, 31 In this study we explore the unique experience and needs of parents who are caregivers to their medically complex children, sometimes for the entirety of their lives. The research question for this study was: What are the care-related responsibilities, challenges, and support needs for caregivers of children and adults with lifelong care needs?

2. Research methods

This study was conducted with a mixed methods design using quantitative surveys and qualitative interviews. The study design was a sequential approach with quantitative surveys conducted first with the opportunity to be contacted for an interview. Parents/caregivers completed quantitative measures on burden of care, parental stress, empowerment and sense of competence. To complement and bring context to the quantitative findings, qualitative description was utilized to explore and describe the experience and contextual factors influencing the experiences of caregivers of children and young adults with lifelong care needs, and to identify their support needs.32, 33 Qualitative description illuminates people’s descriptions of their lived experiences and perspectives with the goal of informing and enhancing clinical practice, policy and care. It describes the words and actions of participants and does not require reframing within a framework or theory. Incorporating a mixed methods design provided a deeper understanding of the multi-faceted perspectives of caregivers of children who require lifelong care and answered different parts of the research question. The quantitative strand focused on measuring parental perceptions of caregiver burden with difficulties and challenges, parental stress, empowerment and competency; the qualitative strand explored the context surrounding these experiences, challenges and needs.

2.1. Recruitment and sample

Parents were recruited using purposive and snowball sampling³⁴ from national childhood disability network groups such as CanChild Center for Disability Research, Children’s Healthcare Canada, Facebook parent support groups, and disability support agencies. Network partners were asked to distribute a research poster and narrative about the study and interested participants were asked to contact the research team using an online link. Seventy-seven parents who agreed to participate were caring for a child with medical complexity (ages 14–46 years) and met the criteria for medical complexity as discussed earlier. In addition, maximum variation sampling was used to recruit 21 parents from the 77 participants who had completed the quantitative assessment tools and had given permission to be contacted for a research interview. This is a typical number for this type of inquiry.³⁵ Maximum variation sampling considered variation in number of children parents were caring for; gender of caregivers and children; complexity of caregiving needs; age of children/adult children; caregiver type (mother, father); languages spoken at home; equity deserving groups traditionally underrepresented in health research (e.g. racialized minorities); marital status of caregivers; geographic location in Canada; and family income.³⁶ The research question was shared with potential participants as well as the reasons for doing the inquiry.

2.2. Research ethics

All procedures were performed in compliance with relevant laws and institutional guidelines and have been approved by the Mount Royal University institutional HREB committee application number 103959 on May 10, 2024.

2.3. Data collection

Eligible participants were sent a link for implied consent electronically in Qualtrics prior to commencing the surveys. Participants could complete all or some of the measures as they felt comfortable. Parents completed four validated surveys from June 2024 -May, 2025 which were stored electronically in Qualtrics: Family Empowerment Scale [FES],³⁷ which measured parents’ sense of competence on three subscale domains – Family, Service System, Community, and overall,³⁷ Parenting Sense of Competence Scale [PSOC] formed by two subscale domains (Efficacy – an instrumental dimension reflecting competence, problem-solving ability, and capability in the parenting role; Satisfaction – an affective dimension reflecting parenting frustration, anxiety, and motivation) and an overall score for parents’ overall perceived efficacy and satisfaction with parenting,³⁸ Parenting Sense of Competence-Revised [PSOC-R] version which captured parents’ perceptions of parenting competence (Efficacy subscale and satisfaction in the parenting role (Satisfaction subscale) and an overall score for parent’s overall perceived efficacy and satisfaction with parenting,³⁹ Pediatric Inventory for Parents [PIP]-Frequency to assess parenting stress and the frequency of stressors related to caring for a child with an illness across four individual subscale domains – Communication, Emotional Distress, Medical Care, Role Function, and the overall frequency of stressors, and PIP-Difficulty to assess parenting stress and the difficulty of stressors related to caring for a child with an illness across the same four individual subscale domains as the PIP-Frequency and the overall difficulty of stressors.⁴⁰ Interested participants who completed the surveys gave permission to be contacted by the research team for an interview. Interviews were conducted between Nov. 2024 and August 2025. Informed consent for the interviews occurred with a consent form sent to the participants prior to the interview which was reviewed by research team members conducting the interviews. The consent form explained what the research was about, what the caregivers were expected to do and their rights to withdraw at any time without penalty. Interviews were conducted individually and occurred virtually over a secure platform. To ensure confidentiality, a unique identifier was assigned to each respondent. In-depth interviews lasted 60–75 min, covered 15–20 questions, and explored experiences with lifelong caregiving. Research questions focused on caregiving responsibilities, supports in everyday life (agencies, government support, informal supports), needs and gaps that existed in meeting their care responsibilities, and what would help caregivers now or in the future to meet care needs. Caregivers were asked to reflect on their experience of caring for a child with lifelong care needs. The interview guide was developed based on the expertise of the researchers, literature evidence about lifelong care needs, and input from the research team members with clinical practice and lived experience. Additional interview questions were added as new insights emerged around topics such as dreams, hopes and fears, until there were no new themes generated.⁴¹ All interviews were conducted in English, recorded and transcribed verbatim. Field notes were taken regarding the interview context as additional sources of valuable data. Names of participants and their children were removed from the transcripts and replaced with a pseudonym chosen by the research team to protect the identity of the participants.

2.4. Analysis

2.4.1. Quantitative analysis

Continuous variables (e.g., age; total and subscale scores for the FES, PSOC, PSOC-R, PIP-Frequency, and PIP-Difficulty were summarized as means and standard deviations (SD) with corresponding 95% confidence intervals (CI). Categorical variables (e.g., demographic characteristics and children’s health needs) were presented as frequencies and percentages. There were only 2 participants who reported on more than one child, so results were presented for children’s medical complexities for the ‘first’ child on whom parents completed their surveys. Descriptive statistics were conducted (demographic characteristics and descriptions of children’s health needs) for the subset of participants who completed qualitative interviews.

Scoring details for all quantitative measures, with associated psychometric properties are presented in Supplementary Table S1. FES Family, Service System, and Community subscale totals were calculated according to published scoring rules, where up to 3 missing/ not applicable responses were permitted.³⁷ For all other scales, we used all available completed items. PSOC³⁸ and PSOC-R³⁹ total and subscale (Efficacy, Satisfaction) scores were computed as item-level sums, with reverse-coded items recoded as required for PSOC. For the PIP-Frequency and PIP-Difficulty total⁴⁰ and subscale scores (Communication, Emotional Distress, Medical Care, and Role Function) were calculated separately for each scale. Missing items were handled according to measure-specific conventions (i.e., prorating only when permitted by scoring guidelines; otherwise treated as missing). Exploratory associations among overall FES, PSOC, PSOC-R, and PIP-Frequency and PIP-Difficulty totals were examined using Pearson’s correlation coefficients with two-tailed significance tests. All analyses were cross-sectional and conducted using Stata MP version 19.0 (StataCorp LLC, College Station, TX).

2.4.2. Qualitative analysis

Thematic analysis was used to analyse the interview data into thematic structures and codes.⁴¹ After analyzing all interview transcripts separately and then together, an initial codebook was created for each category and code. The codes were clustered, and themes were developed inductively based on the research question. Key messages were developed from the themes and sub themes. Rigour was established with researcher reflexivity, maintaining an audit trail of analysis decisions, communicating analysis to the research team, considering variations and similarities in caregivers' perspectives and peer debriefing.⁴¹

3. Findings

3.1. Descriptive statistics

Descriptive statistics were computed for participant characteristics and survey data. (See Table 1, Table 2). Seventy-seven parents participated (mean age=51.6 years, SD=7.6); most identified as female (n = 69/77, 90%) and married (n = 56/77, 73%). Participants reported caring for one to six children, with 94% (n = 72) having at least one child living at home. Nearly all spoke English at home (n = 75, 97%), and were born in Canada (n = 67, 87%). Most had completed post-secondary education (n = 63, 82%), and 39% (n = 30) reported that their partner held a university degree. Caring for family was one of the most reported main activities (n = 68, 88%), while approximately half the sample reported full-time employment (n = 38,49%), with participants reporting a range of working arrangements. Nine respondents (12%) were retired and eight (10%) recovering from illness/disability. Respondents were drawn from seven Canadian provinces, primarily Ontario (n = 42, 55%), Alberta (n = 21, 27%), and British Columbia (n = 9, 12%), and over half resided outside a large metropolitan area (>1 M residents; n = 43, 56%). Most households were financially self-supporting in 2023 (n = 63, 82%), with over half reporting annual household incomes ≥ $100,000 (n = 41, 53%); 19% (n = 15) experienced a significant income change between 2022 and 2023.

Table 1.

Participant Characteristics for survey completion (n = 77).

Characteristic	Category	n (%)
Age (years), mean ± SD	-	51.6 (7.6)
Sex	Male	8 (10)
	Female	69 (90)
Marital status	Married	56 (73)
	Common law	2 (3)
	Separated	5 (6)
	Divorced	9 (12)
	Widowed	2 (3)
	Single (never married)	3 (4)
Number of children (total)	1	15 (19)
	2	33 (43)
	3	24 (31)
	4	2 (3)
	5	2 (3)
	6	1 (1)
Children living at home	0	5 (6)
	1	29 (38)
	2	28 (36)
	3	12 (16)
	4	2 (3)
	6	1 (1)
Languages spoken at home (multiple responses)	English	75 (97)
	French	6 (8)
	Other	9 (12)
Born in Canada	Yes	67 (87)
	No	10 (13)
Highest education completed	High school graduation	5 (6)
	Some college/technical training	4 (5)
	College/technical training graduation	16 (21)
	Some university (≥1 year)	5 (6)
	University degree	47 (61)
Partner’s highest education	Some high school	1 (1)
	High school graduation	5 (6)
	Some college/technical training	2 (3)
	College/technical training graduation	21 (27)
	Some university (≥1 year)	4 (5)
	University degree	30 (39)
	Prefer not to answer	1 (1)
	Missing	13 (17)
Main activities (multiple selections)	Caring for family	68 (88)
	Working full-time	31 (40)
	Working part-time	14 (18)
	Self-employed full-time	7 (9)
	Self-employed part-time	7 (9)
	Recovering from illness/disability	8 (10)
	Looking for work	3 (4)
	Attending school	3 (4)
	Retired	9 (12)
	Not working, not looking	1 (1)
	Other	3 (4)
Province/territory	Alberta	21 (27)
	British Columbia	9 (12)
	New Brunswick	1 (1)
	Newfoundland & Labrador	1 (1)
	Ontario	42 (55)
	Quebec	2 (3)
	Saskatchewan	1 (1)
Community type	Large metropolitan (≥1 M)	34 (44)
	Medium metropolitan	12 (16)
	Small metropolitan	12 (16)
	Non-metro urban	5 (6)
	Non-metro less urban	7 (9)
	Rural	7 (9)
Indigenous identity	Yes	2 (3)
	No	75 (97)
Household financial situation (2023)	Supported by relatives	6 (8)
	Self-supporting	63 (82)
	Other	7 (9)
	Prefer not to answer	1 (1)
Household income (2023)	< $5k	1 (1)
	$5–10k	1 (1)
	$10–15k	1 (1)
	$15–20k	1 (1)
	$20–25k	3 (4)
	$25–30k	1 (1)
	$30–40k	4 (5)
	$40–50k	3 (4)
	$50–60k	5 (6)
	$60–70k	2 (3)
	$70–80k	5 (6)
	$80–90k	3 (4)
	$90–100k	3 (4)
	≥ $100k	41 (53)
	Do not know	1 (1)
	Prefer not to answer	2 (3)
Income change (2022→2023)	Yes	15 (19)
	No	61 (79)
	Prefer not to answer	1 (1)

Abbreviations:

SD: standard deviation

Table 2.

Characteristics of Children of Participants Who Completed Surveys (n = 77).

Characteristic	Category	n (%)
Number of children with lifelong care needs	1*	70 (91)
	2	3 (4)
	3	2 (3)
	4	1 (1)
	Missing	1 (1)
Age of Children with lifelong care needs	Range (years)	14–46
Child 1 - Difficulty with daily activities	A little	6 (8)
	Moderate	18 (23)
	A lot	25 (32)
	Cannot do most activities	21 (27)
	Missing	7 (9)
Child1 - Pain level	No pain	17 (22)
	Low	34 (44)
	Moderate	15 (19)
	A lot	3 (4)
	Prefer not to answer	1 (1)
	Missing	7 (9)
Child 1 - Mental health diagnosis	Yes	34 (44)
	No	29 (38)
	Do not know	6 (8)
	Prefer not to answer	1 (1)
	Missing	7 (9)

Note:

*As we had only 2 participants report medical needs for more than one child, we presented results for children’s medical complexities for the ‘first’ child only.

Descriptive statistics for parents who participated in the interviews are in Table S3 and are similar to the entire study sample. Twenty-one participants participated in the interviews (mean age = 53.5 years, SD = 7.3). Most identified as female (n = 12/21, 57%) and were married (n = 14/21, 67%). Most participants reported caring for between two or three children, and 81% of participants (n = 17) had at least one child living at home. Caring for family was the most frequently reported main activity (n = 18, 46%).

3.2. Child characteristics

Characteristics of children from the surveys are presented in Table S4. All participants had a child with medical complexity as defined earlier. This was verified by the research team who reviewed all participants interested in the study. Most participants (n = 70, 91%) reported caring for one child with lifelong care needs. Among primary (Child 1) responses, parents reported substantial functional challenges: Twenty-three percent (n = 18) described moderate difficulty with daily activities, 32% (n = 25) reported a lot of difficulty, and 27% (n = 21) indicated their child could not perform most activities. Children’s pain levels varied, with 22% (n = 17) reporting that their child experienced no pain, 44% (n = 34) low pain, and 19% (n = 15) moderate pain. Nearly half (n = 34, 44%) indicated their child had received at least one emotional or mental health diagnosis. Characteristics of children from the parents who were interviewed are presented in Table S4 and S5. The complex health needs of children of this subset were similar to the study sample; most reported caring for one child with lifelong care needs (n = 22, 91%). Among primary (Child 1) responses, the majority of parents reported difficulty with daily activities ranging from moderate to unable to do most activities (n = 16, 76%) and some degree of pain (n = 13, 55%). Children ranged in age from adolescence to mid-adulthood, with most between 14 and 17 years (n = 14 children, 58%) up to 46 years of age. A wide range of diagnoses were reported, most commonly rare diseases (n = 10, 42%), intellectual disability (n = 6, 25%), and autism spectrum disorder (n = 5,21%).

3.3. Quantitative scales

Mean FES subscale scores indicated moderate levels of empowerment, with higher scores for the Family (45.0, SD=7.3) and Service System (49.5, SD=6.4) domains than for Community (32.8, SD=8.3). On the PSOC (original), mean Efficacy and Satisfaction scores were 33.4 (SD=5.7) and 33.1 (SD=7.8), respectively, while the PSOC-R yielded similar Efficacy (40.6, SD=9.2) and Satisfaction (27.2, SD=6.3) patterns. PIP-Frequency scores showed that stressful situations occurred occasionally to often across Communication (22.3, SD=7.0), Emotional Distress (47.0, SD=10.2), Medical Care (22.2, SD=7.9), and Role Function (26.9, SD=8.1). PIP-Difficulty scores reflected comparable levels of perceived burden (Communication=22.7, SD=8.0; Emotional Distress=48.6, SD=11.8; Medical Care=19.9, SD=7.5; Role Function=27.6, SD=9.2). Together, these patterns suggest moderate empowerment, parenting competence, and caregiving burden (Table 3).

Table 3.

Subscale Scores for Quantitative Measures (n = 77).

Measure	Subscale	Mean (SD)	95% CI
FES	Family	45.0 (7.3)	43.4–46.7
	Service System	49.5 (6.4)	48.1–51.0
	Community	32.8 (8.3)	30.9–34.7
	Overall	127.3 (17.9)	123.2–131.4
PSOC (Original)	Efficacy	33.4 (5.7)	32.1–34.7
	Satisfaction	33.1 (7.8)	31.4–34.9
	Overall	66.5 (11.6)	63.9–69.1
PSOC-R	Efficacy	40.6 (9.2)	38.5–42.7
	Satisfaction	27.2 (6.3)	25.8–28.7
	Overall	67.8 (13.7)	64.7–71.0
PIP - Frequency	Communication	22.3 (7.0)	20.7–23.8
	Emotional Distress	47.0 (10.2)	44.7–49.3
	Medical Care	22.2 (7.9)	20.4–24.0
	Role Function	26.9 (8.1)	25.1–28.8
	Overall	118.4 (27.8)	112.1–124.8
PIP - Difficulty	Communication	22.7 (8.0)	20.9–24.5
	Emotional Distress	48.6 (11.8)	46.0–51.3
	Medical Care	19.9 (7.5)	18.2–21.6
	Role Function	27.6 (9.2)	25.5–29.7
	Overall	118.9 (32.9)	111.4–126.3

Abbreviations:

CI: confidence interval; FES: Family Empowerment Scale; PIP: Pediatric Inventory for Parents; PSOC: Parenting Sense of Competence Scale; PSOC-R: Parenting Sense of Competence-Revised; SD: standard deviation

Exploratory Pearson correlations among total scores (Table S2) showed that greater empowerment was moderately associated with higher parenting competence (r = 0.61 for PSOC; r = 0.50 for PSOC-R; both p < 0.001). Caregiving burden, particularly PIP-Difficulty, was inversely correlated with empowerment and parenting competence (r ranging from -0.31 to -0.44, all p ≤ 0.007), and strongly positively associated with PIP-Frequency (r = 0.79, p < 0.001).

3.4. Qualitative description

Qualitative interviews provided context to the quantitative findings and further described how parents as caregivers lived, interpreted and sustained the difficulties and challenges of lifelong caregiving. The following themes were identified: a) extreme caregiving demands evolve overtime, impacting all areas of caregivers’ lives; b) health, social, and educational supports decline as children reach adulthood; c) caregivers must often find and fund their own care solutions, and d) caregivers identified a need for comprehensive wraparound supports.

3.5. Extreme caregiving demands evolve over time and impact caregivers’ lives

Parenting and family life changed radically from extreme caregiving demands. Parents discussed lifelong caregiving, evolvement of care needs over time, personal impacts from care demands, and impacts on relationships.

3.5.1. Lifelong caregiving

The realization that parents would become lifelong caregivers became a reality as the child’s condition progressed or no treatment was possible. Janna (mother of daughter in her 20’s with Cerebral Palsy) described a sense of “having to let go of all the things you had hoped or expected your life to turn out to be, and that is ongoing.” Lifelong caregiving had not been the anticipated trajectory for parents. Caregiving demands affected every area of the parent’s life and managing care needs was often intense and all consuming. The awareness of lifelong responsibilities of meeting care needs in a caregiving role was shared by many parents. As Marissa (mother to a 14-year-old son with autism spectrum disorder (ASD)) stated, “When you are raising a child with complexities you are always caring for someone else. They don’t reach a point where they are more independent, right?” Parents shared that participating in everyday life was difficult with the child’s care needs and functional limitations. “We're not like other families. We can't just pick up and say, Oh, hey! You know what? Let's go out for dinner. Like it's a production, right?” (Calli, mother of an 18-year-old daughter with a rare disease).

Anya (mother to a 15-year-old son with a rare neurodevelopmental disorder) described the need to meet her son’s care needs and the inability to just be his parent and not be a caregiver “I feel like I'm a bad parent, because I'm trying to, you know, accomplish what he needs …. But then I'm not able to do any of the you know- fun parenting, enjoyable parenting stuff.” There was pressure on parents to “keep going” even with the prospect of lifelong care needs. For many parents, managing their children’s physical and functional limitations was indefinite: As Calli shared,

My husband and I look at each other, and we're like there's no such thing as retiring. We won't have that luxury. Unless we give her up. which I'm not going to do. So, no like, we will be working parents till the day we die.

3.5.2. Caregiving evolved over time as the growing child’s needs changed

Caregiving changed as the needs of the child and adult changed. As Hazel (mother to a daughter in her 40’s with Down syndrome and chronic health problems) said, “the needs have grown as she has grown.” Tricia, mother of a 16- and 19-year-old with complex care needs, further shared about the changes in care needs:

Society just expects that things will change at a certain number, and it doesn't. But you still need to feed and help your child… …it's still the same, but it's more difficult…

Managing care needs often became more difficult as the physical aspects of care became harder.

Kelly (mother of son in his 20’s with ASD and a rare disease) shared. “How do you bathe somebody taller and heavier than you that can't cooperate, or that may actually even fight with you.” Parents also expressed difficulty dealing with their child’s aggression from sensory meltdowns or risk-seeking behaviours. Richard (father of two 15-year-olds and one 20-year-old son with Fetal Alcohol Spectrum Disorder) described the following situation:

He broke through a wall in the beginning of the pandemic and started becoming very violent and aggressive. It just wasn't safe for him, and we just couldn't keep him or anybody safe because of several risk seeking behaviors. He was placed in a group home.

Caregiving also became more difficult because of deterioration in the child’s or adult child’s health over time. Some child conditions exacerbated with puberty, some adults developed new health issues, sometimes related to primary condition (e.g. pulmonary hypertension and dementia for a child with Down Syndrome). Janna described always being on high alert for symptoms that signalled a major health decline.

That is the other part, there is that piece of whenever you surpass a life expectancy by thirteen years, fourteen years, every time there is any kind of change in her, my alarm bells are like, “Is this it? Is she starting to decline? Is her body starting to shut down?

Some adult children wanted to live independently with community support and parents worked hard to make that happen. Some participants were concerned that their adult children did not have the capacity to make good medical and financial decisions and maintain a clean and safe space.

You try and let them make a decision on their own because that is what people are telling you that you have to do, but on the other hand you are thinking, ‘She is making really terrible choices,’ you know? (Hazel)

3.5.3. Personal impacts from caregiving demands

Parents described physical, mental and social impacts from the cumulative and compounding impacts of caregiving. “I am exhausted all the time; I am stressed all the time” (Tricia). Kelly described the development of chronic pain syndrome from sleep deprivation from caring for her son who only sleeps about 4 h a night. Marissa further described the impacts of stress from caregiving and responsibility.

Every parent probably struggles with the sleep issues and constant care needs of an infant, and then they can’t do anything themselves and you have to do everything for them. For me it feels like an extended infancy, you know? And then the stress and exhaustion that comes with that is just constant. And then you just sort of start getting used to feeling exhausted all the time, like it just becomes normal.

Robert (father of a 19-year-old son with ASD and a brain injury) shared that his “mental health had suffered” from the cumulative worry over the years about his son. Janna also shared the heaviness and constant worry that came with caregiving across the life course.

There is a chronic, I think grief of those who are in this for the long haul are aware of, and it gets called depression and people often find their anti-depressants don’t do much for their chronic sorrow because it is kind of like there isn’t really a pill for this kind of heaviness that we all carry around, I think. Like just from the ongoing losses of this parenting. And for us, like the always present worry of when is it all going to end?

Jacelle, mother of a 14-year-old son with a rare disease, shared how her experience with a child with medical complexity was different from other types of caregiving.

I think it is different because it affects every part of my life. It affects my relationships with my other children. It affects me, being places. It affects my work life. And I like to think in some ways it affects things positively, definitely, too, but it affects my marriage. It affects me like it affects my health.

Parents deprioritized personal care needs and often did not meet their own needs of eating, sleeping, mental health and exercise. Not meeting sleep requirements was mentioned by many parents as children were often awake in the night or needed hands-on care (e.g. Kelly’s son was awake 20 h a day). Instead, parents were “always on call” with “lack of time for themselves” (Barbara, mother to a 39-year-old daughter with Down Syndrome) and had to be responsive to their child’s unpredictable health needs. With the effort to find and fund back up support, some parents did not leave the house very often. Elena (mother of a 16-year-old with complex care needs) noted that she had not taken a trip for 20 years. Barbara said that arranging back-up care is so much work that “by the time you go away you're exhausted.” Justin (father of a 17-year-old son with Dravet syndrome) shared he always had to be ready if something went wrong. “You're also left with anxiety. What if something really bad happened? What if Ben passes away?”

3.5.4. Relationship impacts from caregiving demands

The cumulative impact of caregiving demands led to stress on family and other relationships: As Calli shared, “There are times like, literally like I break down. And I argue with my husband because it does get hard, like, we’re not like other families.” Tricia shared the impact on her relationship with her spouse: “We don't have a lot of common interests anymore, because we've just focused everything on the kids.”

It was difficult to manage all the children’s needs simultaneously, making caregivers feel like “bad parents.” (Anya). Some parents talked about impacts on siblings from witnessing their medically complex sibling’s pain and suffering and their parents’ exhaustion, and from being left with others when the child with medical complexity had to go to the hospital. Justin shared, “So there's been a lot of those situations where lots of sacrifice has been made because of her brother. Right?” He went on to explain more:

we would go to the hospital for like a week, and Cassidy’ d be left with like the grandparent or the neighbor or somebody, because we were in an ambulance. So, there's like a lot of trauma there from her in her whole life.

There was also the tension of needing support but not wanting to overburden siblings “We have a 16-year-old who can actually take care of her sister from top to bottom. And knows way more than any other caregiver I were to hire. But it's not fair to ask a teenager to give up your life. It’s not something they signed up for” (Calli). Some parents intentionally did not put their other children in the role of caregiver, believing they should be children first. Lynn (mother of 17-year-old son with a neuromuscular disorder) shared what she discussed with her child about providing care to her brother with complex needs, “You're his sister. You don't do his diapers. You don't do his suctioning. You're his sister… you don't do that stuff.”

3.6. Healthcare, social, and educational support declined as children reached adulthood

Parents described that government support or resources were substantially reduced or stopped completely as children turned 18 years. When this happened, there was even more onus on parents to manage unmet needs across the life course. There were impacts in healthcare, social and economic support, and educational skill and development.

3.6.1. Healthcare impacts

Healthcare supports and services changed dramatically with supports denied or eliminated when the child turned 18 years. Tricia shared the absence of healthcare plans in place with transitioning into the adult system.

It's harder. Because when he was younger, we had things in place. Now we don't quite know what the next goal is, and now that he's hit this age, we're realizing all the deficits that he has that we didn't focus on when he was younger, like being able to cut his food.

Elena echoed these thoughts:

We're coming up on transition. So, all the wonderful inroads that we've made at [children’s hospital]and the relationships we've built. And they're aware of her history. …it's gonna all go away. And I don't know if the adult care system is even ready to receive her as a patient, because they don't have the knowledge. …Why would you have this specialty center? And then you just throw them into adult care that doesn't have a specialty center. It’ll just be starting from scratch.

Parents’ roles as caregivers within the healthcare system also changed once their children reached the age of capacity. At this point, some parents felt that they were denied a voice in their children’s care, even though in reality they were still responsible for meeting their children’s care needs. As Mia (mother of a daughter in her 20’s with a rare disease) said, “They ignore you as the caregiver. So they're like, well, it's all on the patient. Except that it's not because you're doing a whole bunch of it.” This was in stark contrast to the pediatric health care system where “You go from being the parent of everything, including being their nurse, to like not having access to anything.” (Mia)

Parents also discussed the lack of specialized knowledge of the adult child’s condition in the adult system. As Calli shared, “the adult doctors don't even have that expertise and knowledge… to work with our kids…they [our kids] definitely should not be entering our typical adult healthcare model.”

3.6.2. Decline in social support

Janna discussed how social support from others declined as their child aged. “I think as time goes on … people just feel like you got it and they don’t realize there are ongoing stresses”

Tricia added a similar sentiment and highlighted the experience of isolation.

there's actually a lot of people out there judging you. But they're not willing to give you a hand, and when they're younger, people will step up and you get that whole village thing. But as they get older you become more and more alone, and when you are more and more alone, your child is more and more alone.

This lack of external support as children aged and the need for intensive caregiving led to isolation for parents. As Marissa shared,

Other people just don’t understand how hard it is and how constant it is. So yeah, I guess that is one thing, like ignoring my own needs, feeling exhausted, feeling of isolation, struggling to connect with other people because of it, having others being very judgemental of our child in public.

This lifelong responsibility was not well understood by others who were not caregivers. Barbara shared, “when you especially first meet people, and you say your daughter’s 39, and you’re still looking after them, they kind of look at you like, 'What’s the matter with you'?

3.6.3. Education and skill development

For those youth still in school, there was a lack of appropriate support and skill development in the classroom for options beyond high school. For example, Meena’s 16-year-old daughter with ASD wanted to learn math to have access to post secondary options but was placed in a life skills program, and Lynn’s son was unable to attend school every day to complete his diploma because of lack of nursing support. Elena described the ongoing advocacy required to get her daughter the support she required,

There was almost every year I had to have a battle, and you know I could threaten, like I know what the legal duties are in terms of you have a duty to accommodate her, and every year I'd have to fight to get her supports, and it was crazy, and it was exhausted, and life is hard enough when you have a child like Jilllian, and then to have to fight for everything on top of that makes it extra hard.

Once children graduated high school, there were often no structured regular routine/activities available to them. With the loss of the option to continue in school and the extremely limited availability of day programs, this put extra caregiving demands on the parents, and/or extra coordinating work to research and arrange alternate caregiving arrangements. However, for one parent, it was a blessing not to have her child in school because having to advocate in the school system had taken a toll on her. “I was so glad when she finished school because it's like, Oh, God, we don't have to fight with that anymore.” (Barbara)

3.7. Caregivers often must find and fund their own care solutions

With the lack of support from the government or community for living independently, many parents out of necessity created and funded their own care solutions. Parents shared there were waiting lists for formal housing with not enough houses available to meet the need. Several parents described having to set up a housing cooperative where the parent purchased a house so that their child could be cared for outside of their home and found other parents whose children also required 24/7 care to share the living arrangements and the costs (Barbara and Hazel). This involved finding care providers or an agency who provided care providers, while managing the coordination of care and financial obligations of owning the property. These extra responsibilities added to the caregiver burden. As Kelly said,

So, a lot of parents are buying their own houses and using their own family managed service staff to take care of their adult kids. And that's not an appropriate solution. Not without the right supports. I mean, it's a great idea, but that's a lot of burden on the family again. And then, you know, somebody again still has to take over when the parents are gone to keep that going.

Parents also described family managed systems of care where the caregiver managed the care of the adult child in their home and received provincial funds to hire carers. This provided the family with more independence as to which paid caregivers worked for their child and parents oversaw the provision of care. However, it also brought many additional responsibilities such as recruiting, hiring, training and paying carers, in a constant cycle of training carers who stayed for short periods of time before moving on.

So, we do Family Managed Services which most people do, because that seems to be the easiest way. But then you have the extra burden of advertising for help, going through the resumes, interviewing the people, fighting for their wages, training them, and then, when they leave, do it all over again… you need respite just to find respite. (Kelly)

Parents had to fill in for paid caregivers who were sick or missed their shifts and this added to continuous care responsibilities. Parents who were fortunate to have caregiving support in place were also always on call for medical, social and behavioral issues, regardless of whether the child was living in the home or in a supported living arrangement.

Parent caregivers were always responsible for their children and adult children. If caregiving demands became too overwhelming from years of accumulation of meeting care work - or they wished for their children to have some independence outside of the home, some parents felt guilt and shame about the choices they made, particularly if adult children were living in supportive living. Richard shared, “We might feel guilty because we put our son in care. But we had to, because we couldn't do it anymore. There's a lot of people that will shame you because well, you're not caring for your kid. You know what we couldn't. We just couldn’t. “Richard described the difficulty of managing his child’s complex care needs as his aggressive behaviors became more difficult, “I don't have the energy to do it [take care of him]. I don't necessarily have the skill either.” Janna shared this experience of feeling judged by others for putting her child in care.

Well, for years I did the whole, “Are we doing enough?” like we kind of felt like shitty parents because these other parents … we would start comparing, like what, are we lazy? Are we just assholes? What is wrong with us? So then you would try something and it would just be a disaster, right? And so it took a long time just to come to a place of acceptance of this is our experience and the way it is. It is just the way it is for us.

3.8. Caregivers identified a need for comprehensive wraparound supports

Parents suggested several solutions that could help meet their care needs. One solution was to hire care coordinators to help navigate siloed systems and sectors. Tannis (mother of multiple children with complex care needs, whose oldest son was in his early 20’s) suggested,

Somehow, we have to have an easier way, … kind of a navigator, I guess, right? … but nobody's wanting to pay for it, but the irony is even at the political level, it is far cheaper to help families have these supports earlier and have less crisis management needed later.

Marissa also expressed the need for a navigator to help with the self managed systems of care, where she finds and hires carers for her child.

The way the system is, it does take up a lot of time, energy and mental capacity for parents to have to remember, like every year we have to sign forms to continue to pay our workers and things like that and just staying on top of that. It would help to just have someone to help navigate the system.

She also suggested that caregivers need to receive formal compensation: “I feel like if there are parents who can’t work anymore because of the demand of taking care of their child, I feel there should be money given to them from the government just to survive, right?” Kelly concurred that family caregivers are not receiving medical benefits, nor putting money into a pension plan when they are full-time caregivers: “And I think it's I think it makes sense to give caregivers who either have to, or reasonably choose to give up their income to look after a family member should get a universal basic income.”

Parents also expressed that they did not have the energy to advocate for their families' care needs year after year because of caregiving responsibilities.

what's difficult is that as a sector we don't have time to advocate. We don't have energy to advocate right? We have to find people like yourself to advocate for us because we're just too exhausted. I can't call up my counselor and my Member of Parliament and everybody, and try to raise this awareness. I'm just too exhausted. And so we're so easily, you know, looked over. (Louisa, mother of a 14-year-old with a rare disorder)

Lynn suggested families would benefit from having paid advocates who could advocate for them. Kelly, Anya and Richard suggested more behavioral support and occupational therapy to deal with behavioral challenges. Anya further added the need for additional supports for parents:

And I would love if one of them would be like, Okay, well, we're going to direct our focus to supporting parents of kids with behavioral needs. And you know, if there is like some crisis situation or some incident that happens, we're going to help the parent so that they can be the best parent to support this child through this experience, you know, instead of me having to deal with it.

Overall, the consensus from the parents was the need for support to continue past the age of 18 years to meet their child and families’ chronic unmet care needs.

4. Discussion

Extensive caregiving is required to meet the needs of persons with medical complexity and has no definite end date.⁴². While our quantitative measures captured only moderate levels of caregiver stress and burden, parent caregivers’ qualitative interviews revealed a more complete picture of the extreme toll of caregiving on every area of their lives (with several parents expressing strong emotional responses and crying during interviews). This discrepancy between positive quantitative scores and negative qualitative comments has also been noted by other researchers 43, 44 in various healthcare contexts. In the context of this study, we suggest that caregivers become accustomed to everyday stress and burden and over time perceive this stress as commonplace or “normal” and therefore do not score these experiences unusually highly on questionnaires. However, when they describe their everyday realities in interviews they express the magnitude of these phenomena in their lives.

4.1. Impacts on caregivers

Parents highlighted the cumulative impacts of their caregiving responsibilities and how they affected every aspect of their lives physically, emotionally, financially, and socially. This aligns with Tay et al.,⁴⁵ who discussed the loss of identity and self from management of care work and not meeting one’s basic needs for sleep, exercise, and eating. Furthermore, caregivers spoke of their children and consequently themselves as being forgotten by society when providing lifelong care for their child’s survival, 46, 47 and the lack of funding to meet unmet care needs.

4.2. Family managed care

Parents’ accounts illustrate that our society accepts that caregiving is an individual responsibility with insufficient government funding to care for children and adult children. Ward⁴⁸ argues that family management in care shifts responsibility of care from public welfare systems onto individuals and is often used by policy makers and governments as a fiscal strategy. Lifelong responsibilities for managing care then becomes the work of caregivers that is unrecognized and not remunerated.⁴⁹ Families expressed that they remained unsupported under the tenets of family managed care and were tasked with numerous responsibilities beyond physical caregiving, including advocacy, fund raising, performing medical procedures and therapy, interpreting medical and behavioral symptoms, building social connections, creating housing support or housing adaptations, navigating fragmented systems and sectors, and coordinating health and social care so the adult child could participate in daily life. Parents navigated and coordinated services and support for their children in fragmented and under-resourced health, social care and educational systems that deteriorated in the adult system.

Caregivers’ scores on measures of self-efficacy and family empowerment scales were moderate. As with the measures of stress and burden above, we suggest that these scores need to be interpreted in the context of qualitative insights derived from the interviews. On the one hand, caregivers’ accounts showed them to be extraordinarily self-efficacious, as in the case of Barbara and Hazel, who responded to the lack of appropriate housing support for their adult child by starting their own care homes. On the other hand, the barriers caregivers consistently face across all systems led to them feeling disempowered with a lack of self-efficacy.

4.3. Transition to adult care

Caregiving is an evolving responsibility shaped by insufficient healthcare, economic support, and social support.⁵⁰ This lack of support speaks to structurally fragmented systems and sectors which often significantly reduce support and services once the child transitions into adult systems. The adult child still has lifelong care needs which require substantial care support but with few formal options in place. The qualitative interview findings indicate that children and adults with medical complexity did not receive comprehensive transition planning services. Children who were cared for by specialists in pediatric care systems were left without services and support in the adult systems with a scarcity of providers willing to care for adult children and/or lack of knowledge/expertise about the adults' complex health conditions. These challenges led to inequities in provision of appropriate essential support for those with complex needs and their families. These experiences echo those reported by other studies on the transition of children to adult services 51, 52, 53 and speak to the need for integrated services across systems and sectors and priority funding for services in the transition to adulthood and beyond.

4.4. Recommendations

Recommendations include integrated care models such as alternative care models, holistic supports, provincial and federal funding, and policy decisions.

4.4.1. Integrated care models

Caregivers spoke of the need for coordinators and navigators as well as parent advocates¹⁶ to traverse the difficult journey to find supports that meet the individual needs of the child/adult with complexity and their family. Integrated care models can be developed that support transition points from pediatric care into community-based supports. These system wide models can be delivered by multidisciplinary teams of providers and reduce the overlap and duplication of care by multiple siloed providers implementing plans of care for families of children, including financial implications of care and caregiving.54, 55, 56 Integrated care strategies include the development and implementation of comprehensive health care transition programs beginning early in adolescence with cross speciality and interdisciplinary teams, multisystem collaboration, parental and youth lived experience input, integrated care pathways, and a point person assigned to the family. Successful transition programs consider program development and core components such as extended resources, hospital policies, communication protocols, training and time to implement.57, 58, 59 These integrated models reduce the overlap and duplication of care by multiple siloed providers, by creating and implementing a unified plan of care that considers a comprehensive transition plan that considers the needs and goals of both the child and family as they transition into adult care. ⁶⁰

4.4.2. Alternative models of care

Alternative models of care and policy directives are needed to support lifelong caregiving. Findings from this study inform the need to engage parents/caregivers in priority setting and co-design of care models and interventions.61, 62 Caregivers want a voice in determining what is helpful for their families in meeting unmet care needs.⁴⁹

Alternate models of care need to consider that families can only provide caregiving to their adult children dependent on their own health status and aging. Models of care in the home that consider intergenerational supports or multiple carers with wrap-around care and 24/7 support have been successful and need to be funded with government support.63, 64 There also needs to be consideration for more community placements for adults with medical complexity that are available and accessible,⁵⁸ as parents described long wait lists and a paucity of options for adults to have more independent homes. Formal carers in and out of home placements need to be remunerated sufficiently and trained to care for the needs of persons with complexity.⁶⁵

4.4.3. Holistic supports

Caregivers also spoke of the need for provision of holistic support for the family across the life course outside of healthcare, centered on social, emotional, financial and educational support so the child and adult child can participate more fully in daily life and be integrated into the social fabric of the community. 45, 66, 67, 68 Situating care for the medically complex person in the family considers these larger determinants of health and social complexity such as respite, mental, financial and educational support, home care and behavioral management to support children and their caregivers.69, 70

4.4.4. Funding and policy support

The lack of recognition of the personal and social costs of caregiving speaks to the need for adequate federal and provincial funding and policy directives for formal social supports and networks,71, 72 mental health supports,⁷³ navigation and care coordination support¹⁶ and access to respite and respite providers.58, 74. Support includes regular check ins with caregivers to discuss challenges and problem-based strategies and support in the home from health and social care as needed. Other policy reform includes a national coordinated approach to caregiving with remuneration for out-of-pocket expenses for caregiving and a caregiver wage for this essential care work.75, 76

5. Limitations

The quantitative analysis was cross-sectional, limiting the ability to infer directionality or causality among variables. Correlations were exploratory and intended only to describe patterns of association. All data were self-reported, which may be subject to recall or social desirability bias. Additionally, the sample included predominantly white, English-speaking, well-educated, higher-income sample (over half earning over $100,000 a year), which limits transferability to more marginalized caregiving populations who likely face additional challenges that are not addressed here. Finally, the sample consisted of parents engaged with caregiver networks and may not fully represent all caregivers of children with lifelong care needs.

6. Conclusion

When caregiving across the life course, caregivers grapple with significant challenges and a lack of support to meet their child’s care needs. Caregivers displayed competence and empowerment when meeting care needs, but they did express the impact of the lack of support on their families from under resourced systems of care. The cumulative experience of lifelong caregiving is not recognized nor addressed. This study informs the need for effective support, alternative care frameworks and policy solutions for caregivers caring for children and adults across the life course.

CRediT authorship contribution statement

G. Currie: Writing – review & editing, Writing – original draft, Project administration, Formal analysis, Investigation, Conceptualization. K. Pozniak: Writing – review & editing, Methodology, Investigation, Formal analysis. M. Rodrigues: Writing – review & editing, Formal analysis, Data curation.

Ethics declaration

Written informed consent to take part in the study and to publish the article has been obtained from all participants or their legal representatives. The privacy rights of participants have been observed.

This study was performed in compliance with relevant laws, regulatory frameworks and guidelines where the research took place. This study was approved by the HREB Mount Royal University. (Approval No. 103959)

Ethical statement

All procedures were performed in compliance with relevant laws and institutional guidelines and have been approved by the Mount Royal University institutional HREB committee application number 103959 on May 10, 2024.

Funding

This work was supported by an internal faculty grant from Mount Royal University, grant # 103765.

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Declaration of Competing Interest

We declare no conflicts of interest and operating costs of this study were supported by an internal institutional grant. This work was supported by an internal faculty grant from Mount Royal University, grant # 103765. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Appendix A. Supplementary material

Supplementary material

Data availability

The data that has been used is confidential.